Emily

Cancer #1

May 12, 2018

I have had cancer for a week and a day.

Or, I have had cancer all my life.

Or, I don’t have cancer yet but I will.

I was diagnosed with breast cancer on Friday, May 4th. Today is Saturday, May 12th. I am at a cafe in midtown across the street from the synagogue where my kid goes to Hebrew school. I wasn’t supposed to have cancer and he wasn’t supposed to have Limmud today. When my biopsy in October came back clear I thought that meant I was too. The kid’s baseball team has a game today and he is so much in love with his team that we gave him a choice for today and he chose baseball but then it rained so here we are. Here I am.

I have had cancer for a week and a day.

I always say that scholars ask one or maybe two questions over the course of their lives, it’s all just working through the same set of questions. When I work with students on research projects I encourage them to do that author search, to see how ideas develop over time. This is true for me: I am interested in the ways we order our worlds, through standards and frameworks, lists and documents, call numbers and subject headings, all of these modes of fixing time in place, creating in space something that succeeds to the extent that it can become timeless, erase its becoming and smoothly seem the way it has always been and always will be.

My real life is all about fixing time. My therapist says I am binding my anxiety this way, arming myself against the precarity that has marked my sense of myself and my life since I could breathe. My mother says when I crawled one hand was always a fist. I have guarded myself all my life. You should see my calendar. I have had cancer for a week and a day. When the office called on Thursday at 10am to tell me I needed to be an hour away uptown on the east side for an MRI at 3pm I had to cancel seven things. One day. I went uptown and had an MRI and it confirmed the cancer I had at that moment known I had for six days. On Friday, my doctor saw another spot in my other breast.

We can schedule you for a mammogram and sonogram Monday, unless you think you can get to the office today.

I am in the office right now.

I have had cancer for a week and a day and already I live in the office on 98th Street and 5th Avenue.

So my time is something else now. I already can’t remember before now, it’s amazing how fast the time has gone. My life now flows around a different set of time scales, the hurry up and wait of the waiting room.

Of course, I still have the rest of my life. I am not dying now and there are no signs that I am dying from this soon. The radiologist stood in a tiny room with me and Karen yesterday and described what she saw as two little olives we can just pop out. Nonplussed. Me too, at least some of the time. Everything is brighter. I am spending at least some of my time walking behind myself, like a videorecorder for future viewing. I still want to go to London. I won’t know yet if I can go, I won’t know anything until Monday, or Tuesday, or Wednesday, no way of knowing, maybe we never know anything for sure.

I have had cancer for a week and a day, but the office is closed weekends.

Cancer #2

May 18, 2018

Some of this is just facts.

I have two different primary cancers, one in each breast. Both are small: right side is six millimeters, left side is 1.3 centimeters. A biopsy shows cancer in the lymph nodes under my right arm. The number of women presenting with two primary cancers at the time of initial diagnosis is somewhere around 1%. I am quite special. The cancers themselves, though, are very ordinary. Hormone positive with strong receptivity for both estrogen and progesterone, HER/2 negative. These are common and therefore treatable breast cancers. We know a lot about them, says Dr. Port. We know a lot about what to do with them.

What we’ll do with them is this: I will have two lumpectomies, a sentinel node biopsy of my left arm lymph nodes, and an axillary dissection of my right arm lymph nodes. Recovery from the lumpectomies should just be a few days. I’ll wear a drain in my right arm for up to two weeks. Surgery will be May 29th. I’ll have a follow up with the surgeon on June 8th.

Can I go to Croatia? You may have to hide a small bag under a cardigan sweater. I can hide many things under my cardigan sweater.

The other option, of course, is a double mastectomy. Removing my breasts entirely is a guard against future cancers. I can’t get breast cancer if I don’t have breast tissue. Three factors are in play: a genetic mutation, bilateral breast cancer, and my age at diagnosis, which is 42. (It’s so funny to be young right when I’m starting to feel old.) When I am at my most afraid, when I was huddling over a second glass of wine in the Italian restaurant block from the hospital, crying and crying and crying, in between the PET scan and hearing the results of the PET scan, a double mastectomy makes the most sense.

I want to be done with it, with this.

But we don’t get to be done with it. We don’t get to done with this.

It’s been funny to hear people talk to me about assessing risk, about making decisions about some fantastic and imaginary future and not about my present condition (treatable and curable with a lumpectomy, says this surgeon I trust so much, longevity is the same either way). People say, You could be hit by a truck while crossing the street! That’s how we think about future threat. That already happened to me. My dad was hit by a truck while crossing the street. It’s actually true. You could be hit by a truck while crossing the street. I could be too. I could get cancer again. Or I could not get cancer again. None of the future is happening right now. Plenty of present things are.

So, I am choosing to act on what’s now, since that is all I know and all I have information about. I have been surprised at how much my bodily integrity matters to me. That hasn’t usually been what I’ve valued about me. It’s what’s in the skull, the noggin, if you were here with me now you’d see me tapping my forehead: it’s this. But it turns out it’s this body I inhabit too, a body that I am lucky to experience as a whole one as it is in itself right now. That is a gift from the universe, and one I would like to keep.

May 29th.

Cancer #3

June 6, 2018

I am back in my office and nothing has changed. The remnants of the last two panicked weeks are all around me, stray fax cover sheets to request my pathology slides, my food coop disability release form, Instructions for Filing a Claim. It has really only been twelve days or so, and that includes the trip to London. I should clean things up around here.

The day of surgery itself was long, with ordinary waits and strange delays. They book you for two hours of intake that takes fifteen minutes, but I’m good at sitting in a chair, staring at my phone. Nuclear medicine didn’t have my dose, then was confused about my dose, then dosed me incorrectly. Karen came after Oscar was on the bus and then I had company. She was doing crosswords, eating food packed from home, wearing that hat she’s wearing these days. Ordinary.

We asked the nursing assistant why I couldn’t walk from place to place to my various stops around the hospital complex before going under the knife. We never know how a patient will react to a given procedure. My right breast was compressed in a mammogram machine, numbed, a small hollow needle was inserted until it hit the tiny metal clip, a wire was inserted into the needle until it hit the tiny metal clip, the hollow needle was extracted, the compression was released, and the wire was taped down all over my body. I saw stars, saw myself like a person in a cartoon seeing stars. The mammogram tech taped small ice packs all over my body, I couldn’t drink water. Then they did it again on the left.

When they get you on the table you’re like a copy machine or a car brought in for servicing. They let you keep your glasses on until the very last minute.

Since May 29th, my circle of concern has been reduced to the color and quantity of fluid draining out of my right arm through a tube loosely stitched into a hole in my body. Dangling at the end is a compressed rubber bulb meant to produce a soft, slight suction. I empty it in the morning and at night now, at first it was five times a day. This morning, it was at just 15 milliliters. When it gets to 25 for a 24 hour period I’ll have the tube removed from my body and this last surgical hole in my body stitched closed.

Under my clothes it feels like a crater.

How they’ll reassemble me, I will never understand.

Cancer #4

June 15, 2018

I am in active treatment for bilateral breast cancer that has spread to the lymph nodes on both sides, diagnosed May 4th. I will have a bilateral mastectomy and left axillary node dissection on July 3rd at 2pm.

What that looks like today: a bus along the Croatian coastline, Zadar to Split, the water turns aqua where it hits the land. A whole pizza with peppers and sour cream and a large beer at a table in the middle of the room, the kitchen cut it in triangle slices, I guess that’s how American I look around here. Soccer on every tv, and there are a lot of tvs. Dragging my suitcase a mile because no matter reimbursement policies or what the exchange rate looks like, I am allergic to taxi cabs. Sunk and

sinking, my body will never be the same again after July 3rd at 2pm, how in the world is that just listed on my calendar. Back up and out of it again.

The drain in my arm disappears for hours at a time. We can get used to all kinds of things.

Cancer #5

June 30, 2018

I keep hitting these cognitive blocks. Why do I have to get node dissection on both sides when nobody else does? Because I have cancer on both sides of my body. Why are they removing both of my breasts? Because I have cancer on both sides of my body. Why? Because I have cancer on both sides of my body.

I was given some choices about reconstruction, spent days settled into this as the next impossibility. Do I want no reconstruction? Do I want flap reconstruction (they take fat from your belly and use it to form breasts out of your own tissue)? Do I want silicone implants? Do I want saline implants? Do I want implants under my pectoral muscles? Over my pectoral muscles? Do I want nothing now and everything later? None of my options were Do you want this to stop happening? Can you believe these choices?

I have a good life with so much joy in it. Talking to Charlotte in our hotel room in New Orleans, like a wave. I am so lucky! Dinner with Liza and Doug and Ivan, pizza and beer. I am so lucky! My girlfriend, my kid, my cats, my sisters, my mother, my brother. My colleagues near and far, close and away. The union filed a grievance last week, the first in my tenure as local president. Joy, pure joy. (And some fear! We should talk more about affect and power, maybe when I’m done facing down a big bad sickness.)

I am grateful for calendars and time that happens after, moderating a panel in April in Philadelphia, I’m proud of what we pulled together. The Material Conditions of the Historical Surprise. Some of my favorite archivists talking about how their labor produces your discovery. I should be good by then. I have more cancer than I want to have, it’s sort of everywhere, I haven’t met that many people with this much cancer, I have to get everything off and out. But it’s still the most typical kind, my options are many because this cancer is that normal. By April, I will have back the hair I haven’t lost yet.

My mind grazes lasts. This is the last time I’ll stand in my office with my breasts. This is the last time I’ll see my therapist with my breasts. This is the last time I’ll have sex with my breasts. (More on that one when I can wrap language around it, a devastation my internet searches say almost nothing about, like the erotic lives of men are what matter in that particular loss.) My mind grazes these lasts and turns right away, they’re just not available, it’s too much.

Everybody has been amazing.

Three days away, Tuesday.

Cancer #6

July 9, 2018

I am sitting at my kitchen table typing on my computer, drinking a cup of coffee. My academic paper planner starts in July, so I have my academic paper planner out. It’s July. I am writing down appointments and commitments in this academic paper planner. I have a meeting with my new medical oncologist on Wednesday, and a writing deadline too. Lunch plans on July 17th. Untold chemotherapy appointments that I’ll add when I get them, hopefully within the next week. I like to have appointments.

I am sitting at my kitchen table in a button front shirt, one of two sets of button front pajamas I bought when my surgery appointment got on the calendar. Everything on the internet told me to get two button front shirts, and a wedge pillow to help with sleeping. I have three drains coming out of my body, one on the right and two on the left, and the internet also told me to buy various devices to hold my drains, special cardigans and necklaces and hardware belts. But now, of course, I am an old hand at drains, they don’t bother me at all, they’re pinned to my surgical bra. They’re fine. Nothing to buy here. I’ll get them out in a week or two.

I am sitting at my kitchen table wearing two Natrelle 410 highly cohesive anatomically shaped silicone-filled breast implants, size 560cc, and a PORT-A-CATH POWER P.A.C. implantable access system with power injection capability. I am now a body of machines and devices. When the nurse discharged me from the hospital she handed me a plastic bag of receipts, proofs-of-purchase, for these breasts and this chemo port. I bought them, they’re mine, I can register for their warranties.

I know it’s Monday but it barely feels like it. I think next Monday and then the next will feel more like Mondays, until I’m injected with so much poison that we’re getting through minute by minute again. I took a shower this morning, made my own avocado toast. Nights are hardest. I become convinced that this bruise is blood still actively pooling, that the purpling around my incisions is really a swell of flesh about to burst open. Nights are hard.

This morning, I’m sitting at my kitchen table, drinking a cup of coffee. I scheduled some library sessions for HEOP students on July 30th, asked about hiring processes for our graduate assistant this fall. Maura is coming over to take me on a walk. Maybe we’ll return these library books.

There are restrictions on my port’s flow rate, not to exceed 5 ml/s or a pressure of 300 psi. That’s a condition of my body now.

Chemo #1

July 20, 2018

I am sitting on the couch waiting for my Neulasta injection to complete. The nurses attached a little white box to the skin of my belly yesterday you’ll feel a snap like a rubber band and it dutifully pulsed with a green light until around 8:45 tonight when I heard a sort of ticktickticktick sound and it started releasing its medicine. I will know when it’s finished because that ticking sound will be replaced by a long beep, the blinking green will glow solid, and the little medicine gauge window will read empty. Many signs that things are over. There are also any number of reactions to this drug I am taking for the first time right now, from feeling a little drowsy to severe pain in bones and joints to maybe I won’t be able to breathe at all. We won’t know until we get there.

That’s chemotherapy for me so far: anticipation.

I told my surgical oncologist that I was having trouble sleeping. She looked sort of confused about why I was talking about this, did this thing I saw David Rakoff do at a party once: cue the dog. Paws up, head tilted, quizzical eyeballs, hurrruunnnhh? I saw my medical oncologist three hours later. Told her I was having trouble sleeping. Of course you are, and you’re probably anxious too. I’m in a new world now, away from the surgeon and her measure-twice-cut-once approach to my body. Now I am eligible for massages while I take the drugs that offset the side effects of the drugs I take to offset the side effects of the drugs I take.

Right now, things aren’t so bad. People tell me to wait until tomorrow, the next day, the next day, whatever next day is coming when things will be worse. But tonight I ate dinner (Karen made steak and asparagus, iron rich foods to offset low hemoglobin counts) and I taught my online class (what role do institutional and conceptual norms play in policy analysis and advocacy?) and I chatted with Renata in the hallway. Not only not so bad, but pretty good. Doing my best to stay here.

The Neulasta just let out a long beep and the light in the upper left corner is unmistakably solid green. I am going to celebrate with a glass of water, maybe some prophylactic pain reliever.

Chemo #2

July 30, 2018

I read Barbara Ehrenreich’s piece on “the power of positive thinking” in breast cancer land and it didn’t resonate at all. It’s been what, ten years since she wrote, and for my life the pink ribbons have been replaced by sedate turquoise and soft grays, clouded glass walls, an emphasis on luxury amenities (meaning single-cup coffee makers and a bowl of green apples) and the trappings of privacy (even though there are roughly eleventy billion nurses and assistants hovering about me each second I’m at Mt. Sinai). I wonder what changed. I wonder if what we covet now is not positivity but the sense that we are on the moneyed side of a widening wealth gap, that somehow we’ll end up the winners.

There was a moment about four days out from last week’s infusion when I thought there is nothing here worth preserving. I have a good life that I love very much and really super duper do not want to die, but there it was: there is nothing here worth preserving. The grinding fatigue and nausea, a vague and persistent agoraphobia for a week, a dead taste in my mouth, like everything was dying (which, technically, it was). People keep asking me if I’m going to stay union president while I have cancer or if I’ll just concentrate on your health as if a focus on that broken thing would be salutary. I am doubling down on the things in my life that give it meaning, and the union is one of those things. And crosswords. Those two things.

My hair is finally coming out today. I knew this was coming and yet still here it is, a thing I could not have imagined. I run my hand through my hair and come out with strands. I don’t know what I expected, that I would shed smaller pieces, but the strands are as long as my haircut. It is dead at the root, at the place where it grows.

I go back in on Wednesday, it’s apparently that or die. Trust me, I’ve done plenty of Googling to see if there is a way out that I could lean into and there isn’t one. Kate says this is the brave thing in cancer, not showing up at work or going out to dinner, it’s showing back up a second time after you know what it will do to you, sitting willingly again in the chair.

Chemo #3

August 17, 2018

I am two days out from my third AC infusion. A woman from my health insurance company called me today. She calls every couple of weeks. I am not sure why she is calling me. She asks me how I am doing and I tell her and my guess is that there is some evidence-based practice guideline that says getting cancer patients to describe how they are feeling to a healthcare-adjacent person produces a more positive attitude about cancer. This is not true for me. I don’t know why she’s calling.

My second infusion was scheduled to start at 11:40, done in three hours, Deb was taking me home on the Q train, I should have been on my couch watching Bachelor in Paradise by 4pm. But on Sunday when I was taking a walk with Chris and Karen after brunch, totally casual easy stroll to the entrance of the High Line, my heart rate suddenly pulsed to something like 180 (as registered on an iPhone so take that for what it is), you could see it bouncing around in my neck, flushed, shortness of breath, all of that. We called the hospital. Two hours later a doctor called us back and told us to call the hospital again if it happened again. Why would I do that? I asked. I’d forgotten by the time I was talking to my oncologist. Karen forgets nothing. I am beyond lucky to have her, beyond, and I won’t forget it. It turns out that the A of AC chemo is “cardiotoxic,” a word the woman from the health insurance gave me today, so it’s good that she called after all. I was sent for a CT scan down in radiology after my three hour infusion.

I don’t like going to radiology. You can tell working conditions are worse in radiology, high volume, no relationships to patients. It’s always crowded and everybody’s mad. There are so many children with worried parents. I am so relieved I am the person who is sick and not my child. I did not know this before, but a CT scan requires an IV that injects a contrast agent into your blood so that the scan can more clearly “see” your heart valves. I had cancer in the lymph nodes on both sides of my body. If you stick a needle in my arm, I run the risk of developing lymphedema, a painful condition where my arms swell up with fluid. So, no IVs in my arms.No needle sticks. No blood pressure cuffs. This is a bigger issue than you might expect, to have no good arms anymore.

I have a port for chemo on the left side of my chest, both because AC can burn out your veins and because of the lymph nodes thing. Can you use my port to inject the contrast? Nobody knew. You can if it’s a power port. Is it a power port? Much disdain for me for not carrying my port card with me everywhere so we could consult the port card to see if it was a power port. (I thought you told me to put my port card in the cancer binder you gave me for everything.) I knew it was a power port. I blogged about it on this very blog! I think I used the brand name. The nurses knew it was a power port. Power ports are the only kinds of ports we put in here. The doctors were fuzzy. Port-a-wha? Drabownsky? Who? I don’t know how this isn’t in my medical record. I mean, really, why bother with it at all if it can’t tell you about all the machines in my body. So I had X-rays. If it’s a power port the letters “PT” will be somewhere on the port. I stood there hungry and thirsty against a cold metal plate while my body was moved into this position and then that one and then another one until finally, the PT showed up. It was a power port.

It’s true what they say: the contrast fluid will make you feel like you just peed your pants. You didn’t. Don’t sit up rapidly to check or you’ll bang your head on the scanner. (I didn’t do that.) I was home by 7:30. But as Deb said, we planned to spend the whole day at the hospital, we didn’t have other plans, and that’s just what we did, we spent the whole day at the hospital.

Other things happened this week too. It is amazing how far away and long ago those things seem now. We had our first executive committee meeting of the union with me as president. I need to work on time-keeping and our agendas need to be shorter. I want us to talk less and listen more. We unanimously agreed to send ten of us to the NYC Troublemaker’s School. I’m happy for that. I scheduled a lot of instruction sections. The kid’s at camp. I received so much love in the mail.

Today is Friday. The steroids that give me a semblance of my ordinary self have worn off, I am a remnant. And I know it will pass because all things do with time but that does not mean the present is not also what it is, a bit cloudier and weaker, both hungry and not, moving, but not very fast. And here come a string of days I will be glad to see behind me.

(untitled)

September 10, 2018

I spend some of my time these days in various online support groups for people with cancer experiences like mine. Discussions aren’t about, like, how we’re all gonna die and maybe sooner than we thought, but about breast reconstruction choices: flat? Implants? Various genres of flaps? Etc. Some people defend their choices as the best choice for everybody (people who choose no reconstruction seem particularly prone to the universal claim), there’s a whole evidence-free argument against implants because they “cause” everything from fatigue to rashes to rage (I suspect we get these things anyway), it’s a little like Yelp where you only hear about poor service and not from relatively satisfied consumers. (I’m one of those; my implants are healing fine, sometimes I feel like a monster, sometimes I felt like a monster before this all happened, bodies are monstrous sometimes.)

I think we circle around this because it’s the one choice most of us get to make. I mean, I guess I could choose a non-chemo natural approach to “living with cancer” but I believe in evidence based medicine. I work in the library at a university with a nursing school. But this is a choice we get to make about our bodies in a moment of radically handing them over to something we can’t control at all. I go back for my next infusion in the morning having had approximately 2.5 days when I felt cognitively and physically capable of directing the movement of my self through the world. (Probably that’s always an illusion, but it’s a really useful one to live with most of the time, just in terms of quality of life.)

I also think it’s more about attitude than I would have expected. I know we’re all supposed to hate the “positive attitude” message around cancer. I certainly don’t always have one. Many moments in this where I don’t want to be in a body at all anymore. But I do think a tendency to acknowledge that we have some choices and not others (I could not choose to keep my old body, though that was the obvious first choice), that our choices have consequences (I have silicone implants in my chest that continue to heal and require management and will need to be replaced in ten years), and that those consequences are live-with-able because what else are you going to do, that “positive attitude” has been helpful to me through this.

Chemo #5

September 19, 2018

How are you doing?

or, more commonly

How’s Emily doing?

I have completed four rounds of AC chemo and one round of T. I have three T rounds to go. I will get those three rounds on September 24th, October 8th, and October 22nd. It is September 19th. It is really only about a month to go. When I tell people that number, that October 22nd number, invariably some version of “that’s soon!” comes out. It took me four hours to crawl out of the F train stop at Jay Street-Metrotech this morning, a month to walk from Carroll to school last night. My therapist suggested Monday that I might begin to imagine a future. I see a future. I scheduled a talk in Tacoma in January. It’s as real to me as China, or the moon. January.

I visited friends and family in Los Angeles at the end of August and spent last week in Bozeman. Between now and October 22nd I will skip the dinner and drinks parts and watch television at night in hotel rooms in Albany, Lincoln, Las Vegas, and Syracuse. Two plenaries, an invited talk. Union work, a football game. With the exception of my infusion days, I have not missed a day of work. I took the kid to flag football on Sunday and cook his breakfast every morning I’m home. He has started taking spinach with his eggs like me. Anemia is no joke. I look really normal. I want to feel really normal.

I don’t know if it was the two units of human blood they gave me on Monday or the AC leaving my system for Taxol, but my brain feels back, more with me. I don’t feel high all the time. I couldn’t pull up the face of today’s lunch companion, forgot her name on the walk from work to the restaurant. I am transposing words, but they’re my words. Arbitration for organization. They both matter to me. It is not easy to get them in the right place.

Chemo #8

October 22, 2018

I have been looking at October 22nd since July 18th.

But I have pain in my feet that is making standing and walking difficult. These are signs of chemotherapy-induced neuropathy that can be permanent in about 20% of patients. So the doctor and the people who love me but who are not enduring this wanted to cut the dose of Taxol from one big dose today to three smaller doses administered over three weeks. Laura, Carlyn, and Karen were with me. Add Marcus who’s working at reception and one of the five of us would have permanent nerve damage in our feet if I proceeded with the dose dense Taxol today. I am 43 years old and have already lost so much.

The recliner in infusion room #1 is broken. When you lean back, it reclines. Doesn’t matter if you don’t want to recline. Doesn’t matter if the slow recline motion makes you nauseated once the Taxol starts going in. Doesn’t matter if you’re eating a sandwich and want to remain upright so you don’t get sandwich all over yourself. The chair reclines. When the nurse came in to remove the IV from my port I told her that the recliner was broken. That as I sit in the chair, if I lean back at all, it reclines. I wanted her to know this in case she preferred that I sit upright when she was accessing my port. I am very concerned about the ergonomics of nursing. At least two of the nurses in the chemo unit are there because they hurt their backs on the inpatient wards. Nursing is dangerous, difficult work. I don’t want the nurse to hurt her back when she leans over me to pull out the IV, put a cotton ball and large Primapor bandage on the bleeding spot. (I have become allergic to adhesives. The Primapor causes less redness and blistering than the Tegaderm.) I can’t stop it, this chair just reclines. It has just reclined since I started chemotherapy on July 18th. I know this chair very well, many of us do. The nurse tried jiggling the handle on the side of the recliner, the handle you pull on the side of a working chair to make it recline. Jiggling the handle did not stop the chair from reclining. The chair is broken. I leaned back, the chair reclined, the nurse leaned over me, counted to three. I can’t tell you what it looks like because I don’t want to see. This is my eighth visit and I haven’t opened my eyes for this part yet.

Now I am looking at November 5th. I am not embracing November 5th as tightly.

Radiation #1

November 21, 2018

The way to be good at receiving radiation treatment is to stay still, to not move at all. They will tell you breathing is okay. They will tell you swallowing is okay. Both feel like violations alone in the dark on the bed, breathing and swallowing and staying still, not moving at all.

They will tell you to turn your head to the right when receiving radiation on the left, to the left when receiving radiation on the right. You don’t want to get a sore throat. I don’t understand how any of this works. Dr. Radha told me to apply Aquaphor to my shoulder blades. The radiation will burn all the way through but they will give it to me anyway.

I don’t know if the radiation is coming from the giant buzzing disc that rotates around my body or if it comes from the bright red lights in the walls. The machine has a second arm, a large white metal plate that I see sometimes but other times is hidden. It rotates around, I think. When the radiation therapist steps out of the room she says This is treatment and it must be protocol to say this each time. I don’t know if the sounds I hear are the machines moving or the radiation coming out of the machine or out of the walls. I can’t remember her name.

This morning the radiation therapist called in another woman I had never seen before and the two of them talked to each other over my body about the table. Something wasn’t lining up. They asked me to get off and removed the sheets and added a roller and put the sheets back on and asked me to get back up and then lie down again. It is all metal and a glass plate underneath. Your field is beautiful. Everyone who looks at my body downstairs in the basement in the radiation oncology unit says this to me. I asked what she meant by that, what made it beautiful. The marks are right where they should be so we hardly have to roll you at all.

I was supposed to get a blood draw yesterday. I told the nurse I had axillary node dissections on both sides of my body. The protocol for blood draws in a patient with an axillary node dissection is to take blood from the other arm. I don’t have any other arms. Where do they take blood from you? I told her I didn’t know, that I have a port for now. She shook her head. We’ll do this tomorrow. Today another nurse called after me as I was leaving, asked me if my labs were complete, told me to wait while she checked my record, wait while she set up for a blood draw.

I said no.

Done

January 9, 2019

What would it mean to be done?

We don’t know if the chemotherapy worked. We’ll know if I don’t get cancer again.

We don’t know if the radiation worked. We’ll know if I don’t get cancer again.

We don’t know if the hormone suppression is working. We’ll know if I don’t get cancer again.

It has been twelve days and I have had four blood draws, two intramuscular shots in the butt and the gut, a surgical consult, two new drugs, dosage changes on two other drugs, a consent for a clinical trial. I have scheduled one surgery, one baseline bone density scan, a consult with a gastroenterologist. The skin on my chest and under my arms is brown and peeling, the outlines of the radiation field clear. It was, after all, a rectangle. The blisters are gone. I can open a window but closing it is harder. We use different muscles for each, I guess.

Oscar practices his trombone in the rolling desk chair we got him from Ikea. He holds this instrument in his hands, blows as hard as he can. There’s so much to it, mouth position and slide position, how he breathes and still makes music I’ll never understand. My anxiety roils and then settles on that rolling desk chair, the way he slides to the right, to the left, the trombone listing side to side, playing Auld Lang Syne or Scarborough Fair. The heart of the thing is the sound. I tell myself this and yet the listing, the swiveling, it crowds everything out. I desperately miss the point.

A friend of my dad’s sent me a memoir about a dad dying when he did, I remember a canoe on the cover. It sat next to my bed for months. If I opened it, it might impart some meaning, help me wrap my head around what happened, incorporate it and move on. I didn’t want that. I don’t want that. Leaving it flickering at the edges, just off to the side, the pain like a tether.

But time passes and will pass, it’s like it happened to someone else, people say. Over here, it’s still like it happened to me.

Carrot season

April 28, 2019

I watch my hands peeling carrots. I am watching my hands peeling carrots. We are out of apple season, the apples are soft. It is time for carrots now. We have a new peeler after the last got lost somewhere. It isn’t the thin aluminum peeler from my youth, not anymore. This one is heavy in my hand, it isn’t steel I’m sure, but it could be. My mouth so dry breakfast sticks in my throat. Peeling carrots, carrot after carrot. We are going to the ballgame. If we have enough carrots, maybe we won’t get hungry. My mind does not work like it used to. They say this can happen. I don’t know if it is happening, or if I just believe it is happening, am I making it happen. The bag of carrots Karen brought home is enormous, looks endless. I watch my hands peeling carrots. The weight of them will be gone once we eat them. I miss the apples. When will we be in apple season again?