living underground in the real world

cruelest, part 1.

The next thrilling installment of The Cancer Diaries.

It’s rough.

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_____________

Things got awful in April pretty much immediately.

April 1.

I begin to have suspicions about my mother, which my brother confirms: she isn’t walking anywhere except the bathroom and to make food. This makes me disinclined to bring over food for her, because cooking is the one time she’s on her feet for more than a minute or two at a time. Her feet are swollen from chemo, from the blood clot medication she’s taking, from everything and nothing. The swelling is painful and deeply horrible to her. Her nurse says she needs to walk as much as she can.

Maresa and Kate play a long-con April Fool’s joke on me which has the intended effect: it distracts my mind for a few hours.

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April 2.

My body is beginning to revolt.

Turns out one can only go for five straight months of intense stress without symptoms—who knew! I start having trouble breathing. Now and then, then all the time. The pains move around in my chest, but every time I take a deep breath they’re there. At times throughout the day I thickly realize that my chest feels like the beginnings of a panic attack* all the time, but I put it away and go on, shallowly breathing my way through every day.

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April 3.

I cook somewhat of a Passover dinner and we watch the season finale of Mad Men, in preparation for the season premiere the next night. Having my mother at my house is hard—getting up the steps to my house is a battle, getting around inside is nerve-wracking. I begin to see how she is islanded in. Leaving the house is an increasing struggle. Everything makes her nervous—will she make it to the bathroom in time, will she have to walk in the middle of a room, where she can’t hold onto anything.

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April 6.

My brother loses his mechanic’s job. Not enough experience. At least he can be home to help her more.

April 7.

My brother decides to go to with us to chemo. He has the flu. As soon as we pull onto the Thruway he is hacking and blowing his nose for the next hour. I try to explain gently to him how inconsiderate this is to me and my mother. I try to explain how people with severely compromised immune systems shouldn’t be stuck in closed-up cars with sick people. I try to explain to him how I’ve gone years without getting a cold due to ruthlessly sending employees home when they’re sick and being insane about constant hand washing. My mother responds to this with my-motherish things like “Oh who cares. I’m sure he’s past the contagion point anyway.”

Within a week my mother and I are sick.

When we see the doctor and she asks if my mother is drinking enough, eating enough, exercising enough, she answers as she always does with an answer not rooted in fact but which will surely please the doctor. I make an audible noise and they look at me and I am blunt. “You’re not eating the right things, you’re not drinking nearly enough water, and you are almost completely immobile. I can’t stand to listen to this.” My cruelty cuts her. She tells me I don’t know what I’m talking about. She tells me my brother and I don’t see how she’s trying, how she is doing all the things she should be.

The thing is: she isn’t. Every single day I ask if she wants to go for a walk, and every day she tells me she doesn’t quite feel up to it today but she walked around the block yesterday. I’m not sure if she understands that she repeats the same words to me every day or not.

The day feels sour for a few hours.

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Whenever we are out of sight of my mother, at the cafeteria or stretching our legs in the halls, my brother and I commiserate about how, as he puts it “she’ll never get better at life.” I ask him if he thinks she truly believes she is doing the things she says she is, and we decide that she does. It makes sense, it fits in with how she was when living with my father. Willful ignorance of the facts. Imagined reality as actual reality. What else could you do? I tell him we need to lower our expectations of what her days are. He is quiet.

When we get back to the infusion center, a woman in the area next door is telling the nurses her birthday, as all patients do before getting treatment. 1926. It’s her first day at chemo. I’d stayed up until 1 am the night before watching Downton Abbey with Jacob. I wonder if she ever changed her clothes three times a day, wore pearls to dinner, had a lady’s maid. The nurse is brusquely explaining how the chemo works. She can’t hear that well, so everything is loud. She goes to insert the needle. “Please.” She says softly, in a whimpering voice. “Please. My veins are not good. Please go slowly, please do it gently. Please don’t make it hurt too badly.” The nurse is matter-of-fact and appears not to care. I know their days are hard, too. My brother and mother and I are quiet.

When I get old, how do I promise myself I’ll be strong and good and unafraid?

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April 10.

I wake up with such chest pains that I am convinced by Kate to go to the doctor. They take chest X-rays and an EKG and tell me it must be a pulled muscle and refer me to a cardiologist. I feel better knowing I’m not having a long, slow heart attack and never go to the cardiologist.

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April 12.

I go to my mother’s place to take her on a tiny outing to the café and the garden store to buy flowers for her barren, sullen, despondent-looking porch. When I get to her place at 1 PM it smells terrible and the cat boxes are overflowing. My brother is watching daytime television. It’s the first day over 65 degrees in six months outside, clear and sunny and amazing. She is upstairs, struggling to get dressed. Her arms look like a Picasso painting: from the elbows down they look like normal arms, which is to say: they are horribly swollen. Only I would notice this, to anyone else they look like normal arms. From the elbows up they look like she’s been in Auschwitz for the past year. She’s putting on leggings to cover her “hideous” legs which look like normal human legs but are actually so swollen that a month later we will realize, back when her body has shrunk back to 103 pounds, that she was carrying twenty pounds of water weight at this time. Adema, it’s called. Chemo side effect. No wonder her legs were so heavy she couldn’t walk. I ask if there’s anything I can do to help and she tells me I can put bird feed in the feeder on the porch. She’s begged my brother to do it five times.

Downstairs I ask him what the fuck is the matter with him. I fill up the bird feeder and he comes outside and sits on the stairs, completely silent. He’s locked inside himself. I ask what is happening. “She’s….she doesn’t get it. That she has to do things.” We talk about it. I try to be as compassionate as I can be, but I tell him he has to snap out of his depression about it so he can help her. I tell him she can’t do things right now.

At the café she is restless. We sit outside in the spring sunshine. It’s filled with a million people I know. Small town life. The chair is uncomfortable. We try to chat like we’re any other mother and daughter hanging out on a Sunday afternoon at a café, waving to friends, petting dogs, drinking lemonade. It doesn’t really stick.

When it’s time to go she can’t get out of the chair. She starts panicking. I try to let her get up by herself, which the chemo nurse said I should do as much as possible. Eventually I tell her to put her arms around my waist, and I pick her up. She’s shaky and shaken but OK. We walk to the car OK. Nothing like this has ever happened before. I discuss buying her a cane. She hates the idea. Does anyone ever love the idea?

At the garden store she is fuzzy and unfocused. She doesn’t know what she wants. We get some putted mums and get out of there. At her place I set the mums on her steps. Two pots. Five steps. The asymmetry bothers me.

I wonder if my brother will have cleaned up by the time we get back but the house is untouched. He’s researching bike pedals on the internet. I pull him outside and tell him he has to start pulling his weight. He’s silent. I use their bathroom before I go and it’s unspeakably filthy. The toilet isn’t flushing right, the sink isn’t draining right, and the toilet seat is broken. I won’t mention the other stuff. I ask her how long the toilet has been broken. She says just since yesterday, it broke off when she was trying to get up.

Later, Kate tells me that Dedricks sells little seats you put over the toilet that raise it up just for this reason. Also: canes.

Within two weeks, I’ll have arranged for her a cane, a raised toilet seat, a downstairs emergency commode, a blood pressure monitor, a shower seat, a walker, a handicapped parking pass—and a wheelchair.

I go back to the garden store and get three more mums and put them on the steps and drive away. The next day she texts me, “the neighbors must have liked the flowers—they put three more pots of them on the stairs!”

If I was a good human I’d let it be, but I am not, and I don’t.

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April 13.

I haven’t told you about Thailand and Vietnam.

In February Jacob hatched a plan to go. His stepmother, who is Thai, will be visiting her family in May with Jacob’s four-year-old sister, my little love Anandhi. And his father is coming out from Hawaii for a visit, and Than will be in Vietnam visiting his father at the same time. To make up for missing Hawaii this year and to take advantage of our loved ones being in neighboring countries, Jacob gets all tour managery and plans an insane trip for all six of us—hikes in the third-largest cave in the world, night markets in every city, volunteering at an all-vegan elephant sanctuary, vegetable carving and cooking classes, airb&b accommodations in beautiful bungalows every night, vegan restaurants, fruit tours, beaches, mountains, day trips on crystal green lakes. Since we’ll be with a native speaker in each country, I’m not worried about eating or communicating.

We discuss how I might not be able to go, depending on how my mother is. I don’t really start thinking about it until this week. Everything is all booked. We figured it would be better to be optimistic.

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I need a Hepatitis A shot and a prescription for typhoid pills, and I make a plan to get the shot today. My mother doesn’t understand why she can’t come to the clinic. “Because I’m not taking you to a place filled with sick people.” I’m touched she wants to be so motherly, but Kate takes me. I’m a baby about it, but it’s done quick enough and we go sit at the Vassar campus and read under the budding trees.

By the time we get back into town my brother’s cold is beginning to crush me. I’m exhausted and stiff and filled with phlegm. I have a Planning Board meeting that lasts until 10:30 and by the end of it I’m almost crying with the need to go home into the sheltering arms of hot tea and my bed. I crawl in but can’t sleep.

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I can’t breathe, I’m stuffy and scared. I try until 4 am, then go into the bathroom and sit against the sink. I press my forehead to the cool tiled floor. My mind is hectic and loud to an extent I’ve never before experienced—I’m terrified and feel so helpless, my thoughts feel like they are literally choking me. I can’t get them to stop piling up, wrapping around me. All the things are happening.

I’ve had four panic attacks in my life. I can remember each one, lined up in my mind’s eye, dark omens of horror tucked far away in my memories. Each one has been in the past five years: 1) at shop, on bench 2) car on Huguenot street 3) side of shop 4) back room of shop, and now 5) bathroom, late at night. I’ve never blacked out, I keep thinking. My breath is shorter and shorter and I’m feeling dizzier and dizzier.

Somehow suddenly Kate is there, holding my hand. I am blubbering and horrified that I can’t catch my breath. She guides me back to it. When I can breathe I use the breath to cry, huge horrifying snot-blubbering sobs.

“This was supposed to be the time in her life when she didn’t suffer. My whole life was watching her suffer. I don’t know how to make her not suffer. I don’t want this to be happening.” Over

and over

and over. It’s disturbing, and so intensely human that it throws Kate into a mood of sadness and seriousness for an entire day afterward. But she’s there. She holds my hand. The next day I stay home from work and she goes in even though it’s not her day to work, because otherwise there would be no manager. She brings me elderflower syrup to help me sleep and flowers to look at.

I sit in bed for twelve hours. I only cry once. I set up a visiting nurse for my mother. I buy her Crocs online. Can you believe it? I bought her extruded shoes. I think they will be great for her. I ask the cleaners if they can come every week to her apartment. I make my brother go buy her a cane and other things to help her life, whether she wants them or not. I text him every five minutes until he goes. After six texts he goes.

I answer all my emails. I work on the talk I’m supposed to give at Vassar later in the week—the animal rights club is bringing me to speak on being an “anarchist chocolatier.” I install meditation apps on my phone and do a ½ hour guided meditation while opening up my chest on Jacob’s rolly ball thing. Slowly I come back to myself. I breathe well for the first time in months.

I call Jacob, tell him there’s no way I can go on the trip.

“I know,” he says, quietly, into the phone. “It’ll be there in the future, I promise.”

He offers again and again not to go, and I make him promise he’ll go, with no guilt.

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*Confidential to a dear friend who uses “panic attack” as a quick shorthand for “stress,” as in, “I was having a panic attack this morning because I was running late and couldn’t find my gloves”—please, darling, please stop. It cuts me—and those nearby who have suffered such frightening episodes—so deeply.

April 15. Ruination Day

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Jacob, on tour somewhere, tells me that Gillian texts him “Happy Ruination Day.” I go and listen to both songs and they help me quiet down.

I’ve given up on my campaign to get her to eat well. Dully, I begin to recognize how little it matters. I fully switch over to buying her whatever she wants for dinner. I fill a cart at the with veggie hot dogs and fluffy buns, Heinz ketchup and processed vegan ice cream like crazy. Chips and cookies and pretzels. I even buy her cats the processed food she feeds them. No judgment, no hesitation.

I feel better. She has the same cold and feels the same. She looks like hell. She asks me not to call the doctor. I call the doctor. The swelling, the inability to walk, the cold, the breathlessness, the extreme weakness. They say to bring her in. Saying my millionth prayer of thankfulness for being able to leave the shop in such capable hands, I swoop her up and we head down. Going to her doctor is an all day affair. 1+ hours down, then every visit takes hours, no matter what it’s for. I appreciate the thoroughness and the free wifi in equal measure.

The doctor seems saddened by how quickly she’s gone downhill. She says she needs a blood transfusion, and offers to let her stay in the hospital overnight so we don’t have to drive down the next day, since it takes most of the day. Obviously there’s no way she’s going to want to stay in the hospital. How horrible. I don’t even consider it, but, for the first time, I have an obligation I can’t get out of the next day: the Vassar talk. I was hoping she could go too. They’re paying me an absurd amount of money.

I tell my brother he’ll have to take her and can drop her off at the talk afterward and she should just make it. He has a new job delivering pizzas from 6 pm to 4 am in town, and it would mean getting three hours of sleep. In December and again in February I did things like that all the time. I feel no guilt asking him to go. He tells me she should stay in the hospital overnight because “it will be cleaner for her” and that way we just have to pick her up. I tell him he’s taking her in the morning. It’s done. She looks at me pleadingly—“I don’t want to be in the hospital. Please.” I tell her we’re not even considering it, he’s taking her, that’s it. He texts back. “Ok.”

April 16.

After everything, the transfusion is prolonged a day. We make plans for her to come to my talk. She’ll ride with Maresa, Kate and I will go over first and set up a little chocolate table. I debrief Maresa: don’t let her get out of the car too quickly, she’ll get lightheaded. Hold her arm whether she wants you to or not. Make her use the cane.

I am petrified of public speaking, but my terror is completely erased every time I remember how worried I am about my mother. In this way, and with a little whiskey, I do the talk. Over 50 people come, mostly kids but also some customers of ours. I speak for half an hour and take questions for 20 minutes and Kate never gives me the secret symbol for talking too fast. Amazing! I’m so proud of myself by the end.

The things you can accomplish when your mind is on other things.

Eleven of us go out for dumplings, and my mom is being such a fucking champ, I want to cry every time I look at her. I know she’s exhausted by the outing, achy, weak, ill, but she’s talking and joking and charming all the Vassar animal rights kids, who are showing her photos of the rescued chickens and lab rats they keep in their dorm rooms and comparing animal rights war stories. She’s so cool, everyone tells me over and over.

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April 17.

By some stroke of luck, my brother still takes my mother to the blood transfusion. I might or might not have dramatically underplayed how long it would take. They have to be there by 8 and aren’t done until about 4, not back until almost 6. Selfishly, I am so happy for an uninterrupted day at work that I’m in a cloud of bizarre joy all day, making ice cream, Mother’s Day chocolate prototypes, joking with everyone, breathing good clean springtime air.

At 5, her doctor calls me. “Did they tell you she fell? They didn’t call me, if they had I would have made her go to the emergency room. I’m worried about internal bleeding because of the blood thinners. Can you be with her tonight, and monitor her to make sure she doesn’t have a concussion? Take her to the emergency room if she has any unusual pain.”

I go over and we watch TV and I do computer work and talk to her and listen carefully to her speech, watch her closely.

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April 18.

She’s sore from the fall. Amazingly, that appears to be it. But that, in addition to everything else, means she’s housebound. I come over twice a day and hang out a bit, feeding the cats, cleaning up, doing stuff. My brother works and sleeps and stares at me washing his dishes.

I lure her to the shop with the promise of a milkshake. She shakily gets into and out of the car, and we sit outside in the sunshine and I make her an orange milkshake. She tells me this morning she “felt like giving up—but it’s so nice out here. This milkshake is so good.”

I get very sad, and she tells me not to took sad. “Hey—customers are coming. Don’t look sad.” She tells me living with my dad taught me “two very good things. First, that I am strong. And second, that I can make anything work. So…I will.”

Later. I’m making soup at 10 pm at night at the shop, listening to Boys for Pele for some reason and chopping onions. The onions make me cry and I just keep on crying, I sink against the oven and indulge in ’90s Tori Amos and cry like fucking wild. Maresa and Adrienne come in. I’d completely forgotten they were on their way back from a NYC market. I’m so confused and miserable and so unable to hide it that Maresa asks me if I’d been asleep. She gives me a good hug and we talk. After she leaves I slump down and can’t get up. I get into a stupid Facebook fight, I can’t stop thinking about how much I hate humanity, I can’t get up the energy to finish the soup, clean up, mop the floor, get out of work. I drag myself home at 1 AM and listen to Boys for Pele in bed and cry until I fall asleep.

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Next: Cruelest, Part Two. 

3 Responses to “cruelest, part 1.”

  1. Rebecca Weingart

    I’m so sorry that you and your family are going through this.

    I wish I could’ve attended your talk at Vassar! I bet it was great.

    Reply
  2. Randal Putnam

    Her milkshakes may bring all the boys to the yard, but yours make your mom want to live. When it all gets to be too much, I’ll drive to New Paltz for an orange milkshake. I am so happy to hear you are taking care of yourself. Please keep it up!

    Reply

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