living underground in the real world

“time off” & other hollow concepts / let’s make a list of ways to keep from crying every hour of every day

This is Part Four of The Cancer Diaries.

January 1. 

On January first we take my mom out to lunch. We are the only ones in the restaurant. It’s cold. She leaves her coat on. I have words prepared to say queued up on my phone. yousaidyouweregoingtofightthisbutyouresusingeveryexcusenotto. blah blah. We talk about the food diary. My suggestion is that she takes a week off from work and focuses on getting her apartment unpacked, buying the things she needs for the apartment, and getting herself into a healthy routine that focuses on tumor shrinking, immune system wellness, and weight gain. The next weeks will become a torment of me realizing she will not do these things, but will argue to me that she is doing these things. The next weeks will become me coming over to unpack her apartment with a face mask on because the 80°F apartment is so filled with cat litter dust and the dustiest books on the planet that if I don’t wear the mask I cough all night long. That I can’t enter their apartment without wearing protective gear goes unnoticed by them. I am not an allergy-prone person. These nighttime hacks are new and strange to me.

I hate 2015 already.

January 2. 

I drive Jacob to the plane and I come back and write this:

Driving you to the plane I want to get on to go to the island I love everything feels so heavy & maybe there is a problem with the earth’s gravitational pull after all & maybe I miss you too much already. and the way an airplane flies when you’re next to me on it. fourteen years of january sun and this year I’m here and it’s ok it’s ok the secret shuttered shop is here for me and kauai is kauai is kauai but who needs all that damp when you have other treats really I do but I’ll miss fruit and I’ll miss you

When you drive at night you put your rearview mirror down and this means somehow that you sometimes catch glimpses of your face in it. This freaks me out because I am afraid of aliens in the backseat when I drive alone at night because I watched too much X-Files when I was in high school. When I got to college you and I watched together and I felt better. In college we started going to your dad’s place on Kauai for our winter breaks and it’s fifteen years later and it’s really our only tradition except that this winter I’m in the car alone driving from the airport back home trying not to sneak up on my face in the mirror. Jeffrey Lewis is singing to me about the Chelsea Hotel and everything makes me sad so this makes me sad because you grew up there and there is so close and right now you’re on a plane spinning out over the ocean  // my mother’s not eating still she needs to be driven to chemo I’m so sunken into sadness. I’ll be better once the sun comes up it’s 5:30 in the morning and I’m taking this drive to be queen of the self-pity machine // don’t you think, the fear of aliens is the fear that you will lose yourself, the fear of something familiar becoming an other, that you won’t know what your life is anymore maybe, the shifting sands is what terrifies you.

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January 3. 

I was raised to believe every conspiracy theory and that anything the mainstream world believed was bound to be wrong.

Now I’m somewhere in the middle, like most people.

What’s hard with this health stuff is not quite being able to make up my mind. We’re doing a therapy regimen based on allopathic medicine (chemo) and alternative medicine (green juices, garlic, lots of veggies, acupuncture, maitake, reishi, chaga, ferments, assorted other supplements as I come across them). I just don’t know. It’s not a comprehensive plan. My mom isn’t doing most of the alternative stuff. Not because she doesn’t believe in it, but because—what. I don’t know. She just isn’t. She seems excited when I bring up something, and doesn’t protest when I bring it to her, and will start out dutifully doing it, but in a day or so she sheds it for one reason or another.

Obviously this attitude infuriates and confuses me.

Obviously there is nothing I can do about this.

I wish I believed in anything. Chaga or juicing or chemo or praying or god or parents

or anything at all.

I believe that my body has carried me across the country to a place where I feel safe

I believe that my ability to work hard has carried me into a middle class life and that middle class life means so much to me, because poverty is terrifying

I believe that the work gives me meaning

I believe that my ability to choose how I live means examining how I live is important and

I believe it’s important to be kind

and really that’s all I have.

That she can’t seem to believe in her ability to make meaningful decisions on her own to help herself makes me panicky, worried for my own abilities, so nervous.

I am not my mother I can’t put myself in her place I don’t know what she is thinking I can’t judge her actions according to my own beliefs.

January 4. 

Being around Kate in large doses is the only thing between me and the insane asylum. So we are around each other a lot. Maybe I’m good for her, too? I hope so. My god, Kate. I can’t even.

At night at work I eat a large quantity of the laksa soup I’d given to my mother for dinner. She didn’t want it so why waste it. I can eat a truly huge amount of soup, my most heart-food of all foods.

I didn’t realize until I was finished that I’d dosed it with two tablespoons or so of the special oil I made for her.

I felt so happy. I hung out at work, ate three chocolates one after another (world record for a nibbler like me) and smiled and danced around and Kate came to the shop and watched me be wild and it was amazing.

Drugs are nice. Who knew.

I also answered a longstanding question: the drugs do work, but my mom isn’t eating enough of them to make them work. I believe that’s called “investigative journalism.”

January 5. 

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I don’t know if she has food for dinner and I don’t see how she can because I haven’t brought her any and I can’t bring her any because every time I try to get out of bed I start sobbing and can’t walk.

I keep thinking I won’t keep keeping this journal but then life keeps being horrible.

Jacob video chats me, he’s with Anandhi and they are in their swimsuits about to go to the “beach” which is what Anandhi calls the pool at Jacob’s dad’s house, because the actual beach, 2 miles or so away, is “too cold!” for a four-year-old with Thai blood who has never left Hawaii. I wave hello to her from bed with my stupid tear-stained cheeks and she says to Jacob “Wah-guh-guh need help!”

I can’t exactly put my finger on why I’m crying except that there’s no reason, ever, not to be crying.

I suspect it’s also because caretaking is absolute torture for a creative and efficient person.

I am a person for whom creativity is paramount. Sometimes my need to be efficient gets in the way of that creativity, but mostly the efficiency means I have time for the creativity. I co-run a household with three companion animals in it, have complicated and dynamic relationships with my loved ones and friends, and run a business that employs ten people. In order to make my life work, I’m ruthless at cutting out waste. I order toilet paper two cases at a time—one for home, one for work. I’m that person who would grocery shop through a wholesale account with a natural foods company even if I didn’t have a business—buying in bulk means less trips to the store which means more time for creative projects. I’m obsessed with saving time and energy so that I can still do the quiet, personal projects that make me feel alive—new chocolate ideas, top-secret writing projects, all that shit.

Caretaking is like endlessly buying toilet paper on a slushy February afternoon. Loading them into your car from a shopping cart one roll at a time, for the rest of time. It’s inefficient by nature, and there are very few ways to lifehack it. It’s maddening.

The thing with making your life run as efficiently as you can is that you get rewarded for it by having a good life.

Cause leads to effect. That’s how I live: you put in the work and your life works because of the work.

It’s the way a very very very lucky person can live. I didn’t worry too much about money, was surrounded by love and care, was able to devote my life to work I found meaningful and joyful. I had my little crises and sometimes my head wasn’t quite right, but that’s bound to be the case if you have a heart in this trash world. Now it’s all been thrown off its axis. If my mother can get cancer anything can happen, and I lie in bed at night with the “anything” widening into a canyon the size of the universe. If my mom can have a good heart and still get cancer, what horrors are waiting around the corner.

Basically: I was an idiot, believed I could live a charmed life forever, and now the knowledge that I probably won’t fills me with misery and terror that permeates my existence.

Back to caretaking. I can’t stop thinking that if I just do everything I can for her, everything will be fine. The old model. Buy the best raw materials you can and use the more precise techniques you know and out will come the best chocolates you can produce. But caretaking is random, messy, doesn’t reward experience or knowledge.

I get so sad and so worried about her dinner that I do something I never do but that everyone from my therapist to katejacobmaresalucy aka everyone, says I should do: tell her. I text her to ask if she has food for dinner and that I’m feeling sad.

mom:

I just made some pasta w pesto for me & len. Why do you feel sad?

Me:

that sounds nice! just sad i can’t seem to do more for you. i always want to make everything perfect, you know?

mom:

Don’t be sad about that! You have made everything perfect. Also I have to cling to whatever shreds of self sufficiently I can gather. Very very important to me. You are the best daughter in the world so don’t feel bad about anything ok?

Me:

thanks mom! i just want to cure one measly case of cancer is all, you know?

mom:

We will together!

My mom’s been giving me all her copies of her father’s books, and I’ve been putting them on my mantle. I buy them on eBay every chance I get, and am amassing a nice collection of his long out of print beautifully twee accounts of a city-dwelling naturalist’s life.

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I took a box of my grandmother’s papers from my mom’s. I looked through it a bit. There are some letters from my grandfather to my grandmother that I didn’t read yet, and letters from my grandmother to my mother that she didn’t send, asking her to leave my dad, asking her not to buy a house because she can’t afford it. Some notes to herself about dying, wondering if she will come out of the hospital alive after routine procedures. She was always sure she was going to die. It’s very tragic and sad. Then I found a poem my mother had typed and sent to her called “Thoughts While Nursing Lagusta.” It showed what a good mother my mom tried so hard to be, and it made me cry so much more.

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I spend the rest of the night being gentle with myself. I light candles and make tea and cry and it’s ok, it always is.

January 7. 

We go to chemo and the doctor tells her that her white blood counts are too low and she needs a shot to boost them and we can’t do the chemo and everything is scary.

On the drive my mother tries to explain to me why she isn’t eating the food I make for her. “It’s too…sophisticated,” she says.

The day before I had made her spinach with sautéed garlic.

But yes before that was the laksa and the tagine and all the rest. I want to keep her palate interested in food, I want to spoil her, but. Oh well. I ask what she wants:

Tomato soup “that tastes like tomato soup from a can”

Split pea soup

Veggie burger with ketchup, mustard, relish, grilled onions, crispy French fries and a bun

Lentil soup “with no greens or anything weird in it”

Spaghetti with tomato sauce

I can do this.

I’m not even hurt by it. I just want her to eat. Comfort food, I get it. I have to stop pushing my ideas of what’s tasty and comforting and nice on her.

We drive home from the hospital, chemo pushed to next week, needing to go back the next day for another booster shot and to determine if she needs fluids again because she still isn’t drinking enough. She weighs a flat 100 again.

Unbeknownst to me my brother does Something Bad today that will soon cause everyone a bunch of stress.

January 8. 

Here’s the thing about my mother: I’ve never met someone who cares less about things that don’t matter and more about things that do.

This sounds complimentary and of course I mean it that way.

But sometimes I wish she’d care more that her kitchen lacks a spatula, that her son is sleeping on the floor in the living room because he is uninterested in buying a bed or shelves, which would free up floor space for a bed, that she is eating off paper plates instead of unpacking. She is tired but always has energy to do work, to do things that interest her, but unpacking and home keeping is a thing she will save for me. I am working at the shop every day, working my way methodically through projects saved up for this time and slowly beginning the long process of testing out new Valentine’s chocolates. Kate is helping me run endless errands, she is still my beacon of sanity and fun and everything good and at night we watch TV and make dinner and pretend the world is normal and we are on vacation.

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January 9. 

I’m used to family meal meaning, you know, family meal: when everyone you work with sits down together for a quickie cobbled together from what’s hanging around, what’s going bad, however much of your favorite nibbles you can sneak bites of before or after your shift. Now things are different. Now it’s people I’m actually blood related to coming over to my house once a week and eating food I’ve made for them hoping they will eat it and it will make them healthy and strong. Kate and I make homemade tortillas fresh refried beans Spanish rice with heirloom tomatoes from the dwindling freezer stash guacamole salsa tostones maitake mushrooms

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My farmer friend picks the maitake up for me to cook for my mom at the Union Square market even though we had a big fight last summer. No one cares now and she always remembers to get the mushrooms even though she gets up at 3 AM and gets back after 9 PM, even when it’s too cold to go because her produce will freeze like this week, then she gets the farmer down the road to get them & those maitakes are on the shelf in her walk-in & I guess that’s what a community means.

Plus: red wine poached pears that old chestnut! With yuzu coco cream, honeycomb leftovers, if only honeycomb cured cancer god she loves that honeycomb.

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Kate and my mom have Seinfeld and Friends in common, and they are talking about Friends and Kate asks my mom what Friends character I’d be and then they both go on a 20-minute bender describing how I’m such a Monica. “Because she just wants everything just so, because she’s creative but also so uptight–it’s her perfectly!” My mother seems gleeful at this conversation. Later, when the shop reopens we play this game again and everyone instantly identifies me as the Monica of our world, except for lovely Shana, who charitably says she sees some Phoebe in me.

January 11. 

I go to my mother’s place after work (oh I should tell you about work—it’s fucking amazing. I get the place all to myself, all the counters, all the machines, I play West Wing all day and listen to entire seasons in a day, I get to organize and putter and do everything good that puts me back together again. True, literal, actual paradise, Hawaii be damned.) and put on my mask and dust off books and I dunno. For no reason and all the reasons I leave with such a horrible sadness I have to walk around town for an hour to shake it off. I feel too old, and so judgmental, and I guess these are just my baseline emotions now.

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January 12. 

My mom asks me if I can just drive her to chemo & also everywhere always because my brother gets so angry that he yells at her. My blood turns cold.

“Yells at you? What?” “He gets angry at traffic and yells that he’s never driving me anywhere ever again, and then that spirals and he starts in on how I didn’t buy him a mountain bike in 6th grade, yadda yadda.”

I pause and let the horror of this seep into my bones.

“So…he’s driving his mother to cancer, and he misses a turn, it sets him off, and he starts screaming about how you didn’t buy him a bike 20 years ago?”

“Can you just drive me always?”

{{{My brother has no job and no discernible desire to obtain one.}}}

[[[My brother has some “challenges” I am declining to go into in depth here.]]]

Later that day my brother tells me about the Something Bad because he needs my help to try to remedy it. Remedy it = help keep him out of jail. I tell him that I will help him if he agrees to several conditions, and I carefully and with a modicum of rage lay out my terms, which include therapy, support groups, and other efforts to become a fucking functioning human being so he can help me help mom. He agrees immediately because he is terrified and you would be too.

The discussion of the Something Bad includes a therapeutic/heartbreakingly and horrifyingly depressing frank discussion on our collective memories of the years spent with my father.  My brother tells us that he thinks he has PTSD because of it, which we readily agree with. My mom agrees that we all have PTSD, and tells us a story about how in her car she had a lock for something or other but it scared her so much that she had to throw it away, and in time she realized it scared her so much because because one time my dad threw a lock at her.

So many things I don’t even know about that he did to her.

January 13

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Does learning patience mean getting less done? I can’t decide. But I do think I am becoming a more patient person. Because otherwise I would have exploded weeks ago.

The driveways at work and at home are solid sheets of slippery ice and just leaving the house in the morning feels like a failure. I try to be parsimonious with the salt because it kills the living creatures that habitat near it, but maybe I need to get some sand and spread it everywhere. I am disinclined to do this, so I avoid both death-trap driveways by walking on crunchy snow and constantly check the weather forecast hoping for one of those freak 60°F days. The shop opens up in a week and I have so much Valentine’s work to do.

They still don’t have so many of the things a person needs to live a functional life—furniture hangers kitchen stuff garbage cans etc etc—because my brother threw them all out instead of moving them in an attempt, from what I can gather, to upgrade everything (with what money I can’t really gather). Getting these things for them feels so exhausting that I’ve taken to ordering them on Amazon.com like the fuckup with no politix I’ve become, knowing they won’t ever pay me back for most of them, hoping I can pay my AmEx bill at the end of the month.

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January 15

Chemo is difficult for me but like how dare I even say that when I’m not the one with toxic chemicals pumping into a port implanted into my heart?

Chemo is difficult for me. The unbroken block of time is nice. Nothing to do but computer work so I get lots of computer work done. That feels good.

But the machines, the other patients, I’m too soft for the world of hospitals. My mother’s relationships with the nurses are not the jokey, lady-to-lady relationships the other women have with them. (Of course they are all women.) She is nervous, skittish, tries to joke but they see through it, asks the same questions over and over—last time I got those cramps / then they gave me the thing that made me not have the cramps / will I not have the cramps again. The combination of fierce protectiveness, love, pity, and rage I have for her is more tightly wound at chemo than anywhere else. I mostly keep my head down and answer emails.

Some of the people here have this real lightweight quality, like they are so good at staying posi and being happy. They report their various levels to the nurses with satisfaction or determined ruefulness. I feel so heavy, I sense such a heaviness from my mom. Everything my mother does, everything she eats, everything she says, I am so judgmental about. Hearing myself, I can’t stand it. She keeps asking me for cough drops and tissues cough drops and tissues cough drops and tissues and junk food and isn’t interested in the food I brought, I keep mentioning how much sugar is in the cough drops, wondering aloud why she doesn’t carry tissues if she needs so many all the time. how do people stay so positive? They seem to have some essential support or internal workings that I lack.

I feel wrung out on the drive back. She seems so small in the passenger’s seat, holding the fanny pack full of slowly dripping chemo drugs protectively. Neither of us can figure out why it doesn’t need gravity to go into her. I go home and Google it: her heart powers it. Of course.

The doctor and I had given her one of those endless lectures about how she needs to eat more. 99 lbs today, though she swears the scale I gave her at home said 102 this morning. Could be. But still. The weight thing really beats me down, being so good, as I am, at cooking with fat. The doctor mentions adding coconut oil and avocados to her diet and I want to start jumping up and down and screaming about how I buy coconut oil by the pallet and can’t find ways to make her eat it blah blah how I KNOW ALL THIS BUT SHE WON’T DO IT but I try to remind myself that she is trying, she really is. The doctor says if she continues to lose weight she will have to lessen the chemo dose which will drag things out longer and is really the worst thing she could be doing, really.

For half of the drive you can listen to WNYC, my favorite NPR station, but about a third of the way up you have fuzziness for a while then you have to switch over to the terrible backwoodsy upstate NPR, which I don’t always have the heart for. So we talk. I try to meet her where she is, instead of talking to her about what I want to talk to her about which is that she needs to eat less crackers and rice cakes and more protein and fat.

I ask her about work. She wants to talk about work. I would too. God dear non-existent god please don’t let me ever get cancer. I’d be just as bad as she is, though I think I’d be better. I’d be ignoring the whole damn thing and working every day, just like she is.

Talking about her work always somehow leads to talking about the Holocaust and I ask about our relatives who were in it. She tells me about Tante Mina, who was in Auschwitz, marched on a death march on one of the last days of the war, fell and broke her leg and was left to die for a day or two or three, who knows, then a Russian soldier rescued her. She remembered seeing her a little bit as a child.

The last generation of Holocaust survivors are dying out.

We talk about her family, her great Aunt Rose and great Uncle Pete, how they never had children because Pete was Catholic and Rose was Jewish and even though they were both atheists they wouldn’t budge on which faith to raise a child in. “Rose didn’t even go to services on the high holidays, but she was one of those people who would pick a doctor because they had a Jewish name and be sure to sprinkle in a bunch of Yiddish words and if he didn’t understand them she’d go somewhere else.”

I drop her off and go straight to Subway and it does the goddamn trick. Once or twice a year, I get into a mode where nothing but a footlong on Italian bread with tons of mustard and pickles and all the veggies but no lettuce and the sweet onion dressing AND olive oil and vinegar dressing and oregano and s&p please will fix. Yes I know their bread has yoga mats in it or whatever. I get a small drink and fill it precisely halfway with root beer and that’s my soda quotient for the year and just typing this all right now is making me salivate almost uncontrollably.

January 16 

My brother is trying very hard to be more of a person, and it fills me with crazy stupid love.

When I’m with them I feel at peace even amidst the craziness, because at least I’m there and we’re together and I can watch them and see what’s what, what they need, what I can do. It’s so easy for me to do things, is the thing, when I can tear myself away from work. And it’s so hard for them. She’s healthy, though, relatively speaking. She’s not bed-bound or anything, just tired, and brain-foggy. These are chemo things, but they are still hard to see. I worry that because she’s not pushing herself for longer walks and yoga and keeping up her strength that after, when she’s on the other side of this, she won’t be able to get back to the old self that loved walking so much and went to yoga twice a week. She’s wobbly on her feet, her hair is thinning but they don’t expect it will completely fall out. She’s not on that drug.

January 17

Some days you know you won’t be in that quiet and contemplative space you need to survive, and you just put away those needs. But eventually you need to give in to your needs, too. Tonight I hope to take a bath. Little things.

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It’s so hard to know what’s cancer and what’s not, what is just her not pushing herself when she should be and what’s symptoms. There’s no way of knowing. Once at a local restaurant I asked if the black bean soup was vegan and the waitress cheerfully said “there’s really no way of knowing.” & this is that. Except not because a year later I asked another waitress and she just as cheerfully brought out the can and now I eat canned black bean soup there and it’s fine.

It’s hard to know if I would be handling this all better if it wasn’t winter, but I have my suspicions I’m sort of quietly going through some sort of horrible SAD thing. Every day I pull on my long johns, thick jeans, undershirt, collared shirt, sweater, two pairs of socks, hoodie, scarf, coat, hat, gloves. What perks me up in wintertime is leggings and leg warmers and vintage dresses and vintage cardigans, but I’m wearing the same boring jeans outfits for three days in a row without blinking now. What’s the purpose of complaining about the cold. Too much to do. It’s just another of the ten trillion baseline unpleasant things underlying all the other things.

We go to NYC, Kate and Len and my mom and Than and me and we go to the doctor and go to lunch. The plan is to make a fun day of it, and Kate offers to drive which is magical.

I wrote Jacob an email about the day:

Organizing a city day, planning for parking and routing and ensuring everyone has a fun experience, errands get done, no one gets too cold or bored or tired. My mom got mighty cold and tired at one point. It feels like pulling them with all my weight sometimes.

I looked up a tea shop that was around the corner from the restaurant (Buddha Bodai, so lovely, what I always want to eat, and Kate loves the dim sum so much and seeing her so excited about it makes my day) and it was so wonderful. Run by one woman, a master herbalist, very quirky and old school with strict rules on no touching and no photo taking. You look around then you wait in a line & I get the feeling there’s always a line & you tell her what you want and she measures it out for you. I got two delicious teas for myself, fruity and bright just like I like em. Perfect with a wedge of bergamot, my new favorite fruit. Like a perfumey lemon, like a soft grapefruit, like a sunnier orange. I asked her about teas for pancreatic cancer and she recommended frankinsense, told me about three peer-reviewed studies that showed it helped shrink tumor growth. She also had another cancer tea that I’d heard about, and a mushroom cancer tea. I didn’t go crazy because i know my mom won’t even touch breakfast soup so how would she drink mushroom tea? So I just got the frankincense and while she was measuring it out she told us how to take it and warned that it doesn’t taste good. Outside Than and Kate were talking about how TCM remedies (Traditional Chinese Medicine) never taste good, but they do work, and my mom said “Yuck. Well, I’ll try it.” and almost in unison we all sort of were like “Well…..it’s not about ‘trying it.’ it’s about doing it.” and I know she won’t do it because it won’t taste good and I’m just so confused and depressed and sad all over again.

At the restaurant things dragged on, like they do, like they especially do sometimes with Than, who likes to have long meals, and I was getting that restaurant-antsy thing that I get, but I just put it away. My brother at one point was cutting a dumpling with a single chopstick, just trying to use brute force to magically split it, and the chopstick broke from the pressure and his soup got all over his pants. He didn’t freak out. Then near the end of the meal I was telling a story and he said so loudly “Can we leave? I know you’re taking, but after that?” and Than was still eating, blah blah. He has no shyness about saying things loudly in public, holding up his water glass and pointing at it pointedly in a packed restaurant until a waiter comes by—he wants his questions answered, his needs taken care of, people are there to serve him, that’s their job. It’s a very very very Yearwood-style trait. I remember my grandmother once littering in a parking lot in Mesa and me saying something about it, and her saying it was the job of the people who worked there to clean it so why did I care?

We went to Kam Man to get kitchen supplies cheaply for them, bowls and things. My mom knows she needs so many kitchen things, but she has no money and is so frazzled she can’t think, can’t tell me anything to get, wants to sit down and not look at anything. She used to like…I don’t know—she used to like life, more than she does now. She’s slipping into these ways & I of course know it’s the chemo but what if she can’t pull herself out of it again when it’s all over? She needs to be on alert about it and she’s not and I have to not care so much.

We were standing at a corner waiting for the light to change, and I moved away to stand in the sunshine. I saw my mother looking at me. She walked over to me.

“You look so beautiful. I keep meaning to tell you that.”

 January 18.

My brother is being charming and sweet as best as he can be, and so helpful. I know he’s scared about the Bad Thing. I keep trying to imagine what his daily inner life is like, but I have no idea.

January 20.

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Transitions are hard & it’s always something. You’re on tour you just got home / we have time we have to scrape for it / it’s a holiday I’m exhausted from the last one / it’s chemo you’re exhausted from the last one.

I’d like it better if it just went but instead I guess it’ll keep going up & down forever. Right before Jacob comes home from Hawaii I get all panicky so panicky I really & truly sit & meditate and it really and truly helps. It works & after I knew the thing. Here’s the thing & I sit in the parking lot waiting for the plane & the thing makes me calm:

take offs & landings are hard but if you use em right the flight itself sorta changes you. All that coming & going and if I stop to let it, the ups & downs make me better, because they make me think & that old guy said that thing about the unexamined life. Better partner / girlfriend / biz owner / caretaker. I like slow & steady but it’s going to be up & down so I gotta get better at getting flexy.

January 21. 

Shop reopening day, I’m not even there.

My mom and Jacob and Len and I go to the courthouse to deal with the Bad Thing and I get so nervous when his name is called Jacob puts his hands over mine so I don’t rip off all my fingernails. Of course nothing is settled of course he has to go back.

I struggle, at the courthouse, to find things to talk about with my mother that wouldn’t properly be categorized as “nags.” Later I ask Jacob if he thinks my family finds me annoying. He says “probably sometimes, but who cares? They need you to be annoying.”

Meanwhile, back at the shop, the front door won’t really open because the asphalt under it has somehow expanded in the cold. Only skinny people can get in. I’m not even fucking kidding you. After all this, I have a shop that normal-sized people can’t enter. Finally Jacob and a friend with an asphalt cutter destroy the ground and the door swings freely again. Until then everyone working is subject to the endless “well, I guess if I can’t fit in the door I shouldn’t enter” bullshit that is making us all want to die.

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January 22.

A lot of days during my vacation, when I was working by myself in the shop, I had the feeling that if other people were there their presence would put me into a rage I couldn’t get out of.

Every time I talk about this I need to explain how wonderful the women working at the shop are. It’s so not them. It’s so me. I’m so grateful they exist and are so competent. I learn so much from them, am so in awe of how gentle they are with the weird business I’ve wrenched into being. But still.

Solitude calms me down, so I calmed down while the shop was closed. Now my solitude is gone and I am right back in my nervous breakdown hotel room. I want to scream at everyone, I keep going into the bathroom for crying bouts, I get trapped in my bad brains and insane in a way I can’t step down from. I stop pretending to work around 5, just sit in the back with a heater on my feet because I’m having some sort of breakdown-related extreme susceptibility to cold. I stare at the clock. Two hours until alone time. One hour. 45 minutes. Half hour. Ten minutes.

I can’t even explain what is wrong exactly apart from of course everything.

Sometimes the realization that my mother could not be there in the future is so piercing that I completely disassociate from my body

What’s the point of making anything if your mom isn’t there to see it

I have so many goals that just feel stupid without her, even though she’s not even a part of my life in that way, in a way.

Kate stays after work because I can be around her and still be alone, you know how sometimes people are like that for you? I tell her all the hateful things in my head and she isn’t exactly happy about it because trust me they are incredibly horrid, but still she stays and listens, and then when she leaves I make breakfast soup and watch The West Wing and by the time Jacob comes back from tennis at midnight my head is marginally more organized.

The shop gets so cold at night when everyone leaves.

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January 23. 

I take a mental health day, don’t go into the shop. I sleep in late and realize too late that sleeping in late is at the top of the list of things that make me feel like human scum and ensure a terrible day. I take a shower and feel myself slipping down.

I throw a pair of scissors and break it, sweep a shelf of books off the book shelf, and scream

over and over and over and over

until Jacob holds me so I don’t destroy anything else. Real movie-style girl-freakout crap.

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When it’s over I beg Jacob to tell me when I’ll be better and he tells me I need to find my joie de vivre again, that I don’t sparkle or seem excited about anything lately. I think about how I haven’t gone anywhere but the doctor’s office, NYC for a doctor, a few restaurants, work, and home in months months months. I’ve never been a do-er out in the world, I always wanted time to do things in my head and with my hands, but everything feels stale these days and maybe the world would help since my head is broken.

I go to therapy even though it’s not my therapy day I get stuck in the ice in my therapist’s driveway I start crying before I even get inside / we talk while we wait for the tow truck and of course I feel better at the end and I get my car unstuck by myself. I just needed to be alone in order to do it. It’s a metaphor and it’s not, but solitude is what works.

After therapy I try to do errands and every errand fails. That kind of day. I give up and Jacob and I go to my mom’s place so I can tell them I have to bail on family dinner because the failed errands took up so much time and my head is so bad that I can’t even make food.

She seems good, said her stomach hurt more than her entire life that morning but she felt fine afterward.

My rubric for “seems good” has changed.

I put on my dust mask and finish putting books on the shelf and her apartment is coming along just fine. They still need a couch and some lamps but after Valentine’s Day I can get those things for them. It’s the thing now where everything has to happen after Valentine’s Day. My mom says she’s stunned by how little she can get done in a day.

As soon as everyone leaves the shop I slip in to continue testing Valentine’s chocolates. So late. So late. Everything should be tested, made, photographed, on the site, ready to ship by now. Ridiculous. When my head is bad like this it’s hard to work and not working makes me feel like a piece of scum again blah blah the whole cycle I am in it.

Just as I’m breathing in the quiet still air of the empty shop my brother texts me to say he’s coming over to get a macaron and hang out. He really likes Maresa’s macs. He’s gotten into this habit of texting me “U at the shop?” at around 7:30 and he comes over and picks things up and looks at them and eats macs and we talk a little in his halting little way. He has no way of knowing that this is hard on me. I’m doing pretty well with it not being too hard on me. I just do my thing.

I can already tell my rage heart won’t let me work well so I give up before I start, teach him how to make barks. How to tell when the chocolate is tempered, when it’s crystallized. Tell him about the bark I’m trying to make pretty but it just keeps coming out messy: fondant hearts, candied rose petals, freeze dried strawberries, candied hibiscus, and candied bergamot and blood orange. Too much shit. Getting the fondant the right temp in order to make the hearts good is a thing, will the candied citrus get sticky is a thing, everything is always a goddamn thing.

I drive him home and we talk in the car about mom’s chemo, the choose-your-own-adventure path that comes after it. The dark car is a safer space to talk about the scary things. My heart is all jumpy with love for him. For the first time in 20 years or so.

January 24.

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I think I’m feeling better but then I get to work and things get bad again. Tiny things set me off and the rage swallows me up, jumps up from the inner core of molten hate I’m always terrified is what I’m truly composed of, instead of blood and bones.

It’s a very bad day see photo above but by the end of it I’ve drained it all out of me.

I did weird things all day to calm down. Cut vegetables in ridiculous ways. Sometimes it works.

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January 25.

I can tell the rage has lifted the second I wake up. You always know.

I’m so thankful I crumple into a ball and start to cry while taking a shower, so grateful not to feel it, and so completely weakened by how empty I am after a rage episode, the long work of building myself back up again.

After the rage comes the process of making it up to the people you raged around. It’s ridiculously tough for them. I make my amends and have hours-long talks with those closest to me to try to figure out why it got so bad, why it got better, and what can be learned so it doesn’t happen again. I make lists with careful handwriting and paste them in my journal.

  • Every time you look at the clock or wash your hands at work, let the time and the water trigger a refocusing of your intentions on what you want to be feeling: positive, productive.
  • Date nights with those I love every week.
  • Two days off a week while the shop is open. Working on Mondays alone in the special quiet shop.
  • Reading books in bed instead of screens.

New Year’s resolution things but for reals this time. I’m good at resolutions, honestly. Lists work for me.

I usually do this after an episode, this tightening of energies, but it feels more monumental now. I have so few ragers these days, and more tools to get through them. That’s something. It feels like a lot.

January 27. 

The days are good again. I can raise up the world of things that need to be done again. A head newly purified after a few horrifying days of rage is the only gift that the disgusting beast of anger gives you. The earth is babysoft again, my gratitude for not having ruined my life with hate is all-consuming, endlessly humbling. I am small and scared, but putting one foot in front of the other, remembering how to be a person.

It is snowing stars in NYC and everyone’s sad because there’s no snow day for us. I don’t mind the lack of snow, but had planned a quiet day at home, doing calligraphy for Valentine’s boxes, writing friends letters.

The three friends I mentioned in Part Three? I’ve reconciled with two of them, and written the other one off. Pretty good percentage, really. I did something I don’t usually do with the two: was honest with them about my feelings and started a dialog with them about it. Who knew you could do such things? I’m not good at it and it scared me, but things are better now. Meanwhile, my unbelievably caring community of local pals, shop workers & customers, and far-flung friends continues to bring me treats, encouraging emojis, emails, letters, and endless good feels. I never knew I could be this dependent on people. Or that they would come through for me this spectacularly.

January 28.

My mother has chemo and I plead Valentine’s rush & ask if my brother can take her. She says that’s fine with her, and I ask again, mention the road rage thing, and she says it will be fine. I make my brother promise he won’t start screaming.

My guilt at not going with her is so intense I have stomach cramps all morning, but they’re back by 3 PM and she seems so good, I make her a drinking chocolate and some beets and she hangs out at the shop a bit. The doctor said her blood counts are fine, her weight isn’t decreasing. I breathe again, begin to realize that she’s actually doing amazingly well, considering everything.

January 29. 

Jacob’s leaves at 4 AM for one show in Mexico and sends me an email from the airport with the subject line “Things you said in your sleep last night.”

“I was dreaming that Len got a lamp but it wasn’t a lamp I wanted him to get. ”

“I just don’t want to worry about everyone all the time.”

I just happened to be up when you said these things, it was unprovoked. Just thought I’d share, might shed some light on your anxiousness.

Love,
J

Tooth cleaning day. I’m careful with my teeth because I like being a chocolatier with good teeth, but lately I haven’t been careful with my teeth. Lately I’ve been a human mess. The hygienist is cleaning then and she keeps saying how they’ve changed so much since my last checkup six months ago. “Are you having acid reflux? Eating a lot more sugar? Any health problems? Sucking on hard candies a lot?” Nothing’s changed, I tell her. I’ve actually been watching my sugar really closely, spitting out tasters at work, never eating sugar outside of work. I feel nervous. Finally she says, “Are you experiencing any stress you weren’t experiencing in July?” And like the baby that I am I start crying and tell her. What I hate is when people say “What kind of cancer?” And you have to say “Pancreatic.” And then they get extra serious and look at you differently.

She says I need to be wearing my mouth guard at night and “honey, that’s some serious stress. Wear it as much as you can, OK? You’re grinding your teeth away to nothing, ok? I’m serious.” I have an abscessed root canal too. There goes the Valentine’s cash I’ll be making soon. Someday I should get dental insurance. I feel ashamed and sad.

I get to work and the enrober isn’t working, which means the entire day is stalled. Kate and I fix it but it’s a horrible hour of worry over our $20,000 machine that costs at least $1,000 every time the repair person needs to come from Buffalo to fix it.

My brother texts to tell me my mother isn’t feeling well. I call her and arrange for my brother to pick up treats from her, ask her what she wants to eat. Mashed potatoes. I make them for her, feel so lucky I have a job where I can take a few minutes out to mash some potatoes for my mom. I bring them over to her and she looks pale and weak.

I go back to work, make chocolates, do paperwork, feel sunk down inside myself.

I’m still doing the refocusing energies thing, every hour on the hour when I feel angry or stressed. It helps. Every hour is a new chance to feel OK.

That’s something.

IMGP5748Next: April 7

10 Responses to ““time off” & other hollow concepts / let’s make a list of ways to keep from crying every hour of every day”

  1. Lacey

    Randy and I are reading this on separate devices, but right next to one another. We are both silent. He looks serious and sad. I feel sad and my heart aches for you. I also believe that you are the strongest person I have ever known, other than Randy. So similar you both are. Save that conversation for another time. I love you and sincerely ask you to let me know if there is anything that I can do to help.

    Reply
  2. Katie

    I read this right before I went to sleep last night and had a dream that cholesterol was considered essential in a cancer diet because it is also a fundamental part of every cell’s structure. I had a biology teacher who claimed we need cholesterol for our cellular health. Obviously vegan diets are great if doable and are often the healthiest way to go, but perhaps in the case of a severe illness concessions to this may be more beneficial. In the dream it was chicken and eggs that were the recommended foods. I wanted to share this even at the risk of being offensive in case there is ANY life-giving truth to it.

    Reply
  3. MeShell

    I read your cancer journal posts and cry. Empathy cries? I don’t know. I’m going through the similar yet different cancer treatment of a parent right now, similar stubborn avoidance, the trying but not doing, similar but different circumstances.

    I’m sorry. I’m also oddly awestruck by your honesty and openness about the struggle involved in this.

    You are doing the best you can, and you seem to be some kind of super human, but I feel compelled to post on posts like this that you’ve got to make sure to take care of yourself too. Because people caring for people forget to take care of themselves. And wear your mouth guard. Someday I might just remember to stick mine into my face!

    Plus a comment on this blog has also taught me that I will never give advice based on things I learn from dreams. Else I start sounding like the professor from Futurama.

    Reply
    • Katie

      In truth, it was only the dream that sparked it, but I did in fact have a biology teacher recently who believed eating a small amount of cholesterol was essential for optimal cellular health because of all cells’ basic structure.

      Reply

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