Cancer

I don’t retain vocabulary related to cancer. Recently someone asked me what pills I’m taking, and I needed to check the bottles. When someone asks what kind of chemotherapy I received, I need to look it up. In meetings with my oncologist, I can feel my brain reassuring me, Just write it down. Then I’ll get rid of it for you. 

One explanation could be that trauma-exposed individuals sometimes fail to retain upsetting words or material. I once read this somewhere. I don’t know where.

In addition to all the scientific terminology, I reject most of the expressive terms around disease – for example, I am not on a journey – and have a particular disdain for military metaphors. If one “loses the fight” against depression, then that person becomes a loser. Speaking about my father, I once wrote, “My dad wasn’t a soldier in the fight against Alzheimer’s. He was an accountant who forgot his friends’ names.” In Silvia Vasquez-Lavado’s beautiful memoir, In the Shadow of the Mountain, she writes, “Surviving doesn’t mean you’re okay. It doesn’t mean you’re better. It just means you’re alive.”

All that said, my right boob is squeaking. And there’s a name for that.  

In general, I love my fake breasts. They’re perky and squishy and, best of all, cancer free. But recently, one of them started squeaking. I first noticed it when I swim. Just as I bring my right arm over my head, I feel a rubbing sensation in my chest. It’s like the sound of bare legs on a leather couch, or rubber soles on a newly polished gym floor. Except no one else can hear it. The call is coming from inside the house. 

Last week, at my cancer support group, I unmuted myself and asked, “Has anyone else felt their implant squeak?” One woman laughed and said her implant “farts” when she’s at high altitude. Another woman googled squeaky implant and said, “It’s totally a thing. You can read about it.” 

Bourdonnement is a temporary condition where the implant rubs against the stretched-out pectoral muscle, causing friction. It is not dangerous, and when I emailed my plastic surgeon asking for advice, his office responded, “Yes, some women have reported this feeling.”

Upon learning that the condition was both temporary and benign, I became obsessed. This is a word I can get behind. It is fun to say and sounds like a lingerie shop or a corner store. “I’m taking my bicyclette down to the bourdonnement. Need anything?”

My French-speaking cousin says bourdonnement means buzzing (bourdon is French for bumblebee). A Greek friend texted me the following: “Bourdes means bullshit, and onnementos means that with which I am burdened and have to face. So bourdonnement must mean, Bullshit I have to deal with.” 

My physical therapist is teaching me breast massage, which should help the implants settle into place. But in the meantime, I hear a whoopie cushion every time I reach for the nice wineglasses. This morning I thought I heard a mouse in the shower, and later, when I closed the trunk of my car, I was startled by the sound of a rubber duckie. 

Maybe this is what it’s like to go crazy. Except instead of the voices telling me to jump out the window, they are reminding me I had cancer. What brave little soldiers. 

The most talked-about chemo side effect is hair loss. When my eyebrows fell out, I turned to YouTube where a beautiful woman with a British accent and alopecia discussed the importance of using both powder and pencil to create the effect of thick brows. “Don’t worry if they don’t match,” she whispers, leaning into the camera, “Your eyebrows are sisters, not twins.”

The “sisters, not twins” expression is also used in the world of breast reconstruction. In the case of women who have single mastectomies and opt for implants, the goal is to complement the remaining breast, not duplicate it. In my case, I had what’s called a nipple sparing double mastectomy, which means the surgeon flipped open my areolae like manhole covers, removed all the breast tissue, and inserted expanders to hold the place for my future implants. For six months, under my pectoral muscles, sat the expanders. A woman in my support group referred to them as Capri-Sun packets, which explained why sleeping on my side felt like snuggling with a succulent.      

Four days ago, I had my exchange surgery, where once again, the manholes were opened, the lunchbox beverages were removed, and silicone implants (cushioned by some of my own fat) were inserted into place. I am bandaged up for one week, waiting to return to the hospital for the great unveiling.

I am not a woman who leads with her chest. My guess is that my breasts were rarely the subject of conversation, for which I was always thankful. However, I did love them, especially when they fed my babies. Since I found a lump at the beginning of this year, my breasts have been manipulated, evaluated, kneaded, drawn on, and cut open. Friends and strangers have asked me what sort of implants I want, and whether they will be smaller or larger than my “real” breasts. Upon learning that, due to the permanent perkiness factor, bras would no longer be “needed,” several women have remarked, “You’re so lucky.”

I am not offended by any of this, and I often bring up the subject myself. Boobs are fascinating and fun. They’re squishy and sensual and look nice in clothing. Focusing on my appearance is admittedly a distraction. Implants are sexier to talk about than ovary removal, which I also had done this week. No one makes porn sites about medically induced menopause.  

But I am simultaneously tired of talking about my breasts, and nervous for the big reveal. I’ve asked to be alone when I remove the bandaging. I want to be the first person to see and touch them. They will be sisters, not twins. And I will love my breasts. Not because of how they look, but because they will be cancer-free.   

When I was fifteen, I walked into a sliding glass door. I still remember the private school girl’s snort. “Guess what Rebecca did,” she announced to a room full of boys in collared shirts.  

Do birds tease each other when they crash into glass windows? I doubt it. They might notice José or Janet has left the flock, but they probably just carry on with the business of flying.

Confused birds occasionally fly into the floor-to-ceiling windows of my house. I always feel sad when it happens and resolve to do something about it, but never follow through. The most recent collision was last night.  

I was sitting at the dining table alone, with a debilitating headache, missing out on something fun. Nurse Nancy with the cheerful voice had confirmed that, yes, headaches can be a side effect of the chemotherapy. When I told her it hurt to the touch, she said, “Your scalp might have some nerve damage.”

Great.

I had poured myself a glass of rosé even though no one had recommended this. I took Tylenol and made myself a bowl of chickpea pasta that tasted sandy. I opened my laptop and started watching a new show with Sandra Oh. Twenty minutes in, I heard a noise somewhere between a boom and a splat. 

The bird had fallen onto our plastic green IKEA chair. With its yellow belly, pale green wings, and legs sticking straight up in the air, the bird’s tiny tummy rose and fell with great haste. I closed my laptop and watched this new show, Tiny Creatures In Distress.  

Sipping my wine, I took stock. These last six months have been a bizarre dream. One month before my first novel was published, I received a phone call from an oncology nurse who said plainly, “It’s not the news we were hoping for.” Since then, I have been floating above myself, going through the motions of breast cancer treatments. 

I finished my fifteenth infusion of chemotherapy this week. One to go. My body feels encased in metal, or molasses. When I walk up two stairs, my legs want to fold. My nose bleeds without warning, and my three remaining eyebrow hairs stick straight out, in shock that they’re still here. And I am tired all the time. I have aged thirty years in thirty weeks. Is this what it’s like to be old? 

My mother and I were on the phone recently, comparing medical appointments. I said, “If this cancer comes back when I’m old, I don’t think I can do chemo again.” She said, “You say that now but when you’re old you’ll do anything to spend one more day with your family. Trust me.” 

I haven’t forgotten about the bird. 

After ten minutes or so, it rolled over and stood on the chair, still breathing heavily. It appeared to be looking at me through the glass. By now, our kitten was watching from inside, drooling. The three of us stayed this way for a while, stuck in a circle of curiosity – the bird looking at me, me looking at the cat, the cat looking at the bird. 

I try to take care of my body the way I would a child, a trick I picked up from Caitlin Moran. In her essay, “A Letter to Teenage Girls,” Moran instructs girls to provide safety and comfort to their bodies the way one would to an infant. I find this idea very comforting.

Walking into the infusion center week after week is not easy. Repeatedly poisoning myself in order to heal is a mind fuck. When I enter the hospital, it helps to tell myself, I would do this for my child. I would help my baby get better.

The bird finally began hopping around on the chair, pacing back and forth. I took a picture and sent it to a friend in Melbourne. “This doesn’t capture how bright the yellow is,” I wrote. 

I took a bite of gross gluten-free pasta and blew my bloody nose into a paper towel. When I looked outside, the bird was gone.  

You might believe the bird represents something here. Ending with a bird metaphor would be lovely. But the bird is not me. It is just a bird. They crash into windows sometimes, and the cancer is just a disease.

Boris is a middle-aged grocer with a stained t-shirt and a big grin. He prefers customers who pay in cash, and he tosses apples to the latchkey kids who come by after school. He donates blood as often as he can. He’s unfazed by needles and knows that his blood type – O negative – is the magic kind that can help anyone. 

That’s how I imagine him. 

My sister-in-law and I named my anonymous blood donor Boris. The charge nurse who is named after a month that is not April, May nor June warned me I could become cold as his blood first circulated throughout my body. As I watched the beet red liquid slink its way through the plastic tube attached to the port in my chest, I thought of the Buffy episode in which Spike takes Buffy to a brothel where humans pay vampires to drink their blood. I did not get cold.    

I needed a blood transfusion because chemotherapy caused my hemoglobin to drop. Hemoglobin is a protein that carries oxygen around the body, and low hemoglobin is related to anemia, a condition I had for a while as a teenager. I don’t remember feeling tired back then, but I do remember applying gold eyeliner before school and my mom shouting up the stairs, “Iron pills!” I didn’t like taking pills. Sometimes I lied to my mom and was mean about it. “I took the stupid iron pills Mom. Why do you always think I’m lying?” 

I felt weird about getting a blood transfusion. Who is this Boris fellow and what’s in his blood? The nurse assured me the process of preparing blood for transfer is safe. When she began using words like centrifuge and storage conditions, I realized I didn’t care and stared at the hazardous waste bin.

This was not the first time I didn’t understand something. Most days I don’t understand most things. I implicitly trust the expertise of other people when I drive my car, turn on my stove, and send my children back to in-person school. 

The working title of my first novel Edie Richter is Not Alone was You Belong to Everyone. One theme in the novel is that despite whatever intentions we might have to be self-sufficient and independent, we are connected and have a responsibility to each other. This is not a noteworthy observation, but it’s something I felt like exploring. 

Now, being treated for cancer, I can’t escape this idea. Week after week, I go to the hospital for everyone who loves me, including, but not limited to, myself. I don’t know how doxorubicin and cyclophosphamide work. I can’t even spell them without googling. 

This morning, someone ran a stop sign just as I stepped into the intersection. It reminded me that today, like every day, my life is in other people’s hands.  

What I’m saying is that everyone should get vaccinated. 

The hardest part of cancer is walking into the infusion center week after week. The hardest part is smelling the alcohol swabs, wearing yet another wristband, and seeing the avocado drawing with the caption, “You guac!” The hardest part is answering the same questions about my birthday, whether my insurance has changed, and if I have any new allergies. I don’t want to get my blood drawn, and I don’t want to get weighed every week by the same woman with the beautiful blue eyes who has a “Helluva commute I tell you. Looks like the world is getting back to normal.” 

I don’t have any fucking new allergies.

I wish for a fire alarm in the middle of one of my infusions. I want the nurse to panic and rush me out of the building, still attached to my IV. The street would be filled with sick people and tiny babies in incubators. We would squint at the sunshine waiting for the fire fighters to arrive. A siren in the distance would cue my oncologist to start directing traffic, telling cars to get out of the way, to make way for the fire truck. My surgeon, fresh blood on her scrubs, would strike up a conversation with the check-in guy. “Can you believe this?” she’d say, removing her gloves. “Well, this is different!” One of the babies would start to cry and, maybe because I’m wearing a soft pink sweater, one of the nurses would ask if I’d mind holding the baby. I’d still be holding the warm blanket from the infusion center so I’d wrap it around the baby and sit down carefully on the curb. The baby’s eyes would be foggy because they’re brand new. I’d whisper, “Hush, it’s just a warning.” The truck would pull up and four fire fighters would run inside. The cafeteria woman would have a guitar and she would start playing Paul Simon’s “I Know What I Know.” Everyone would sing along. She moved so easily all I could think of was sunlight. The baby I’m holding would fall asleep. I’d stand up, taking care my IV is still in place, and return the baby to a nurse. I’d start dancing with the woman with the blue eyes who does my vitals. We’d be perfectly in step, doing a Charleston type of move.

It would be a false alarm of course, and everyone would eventually go back inside. But that day would be different. Easy even.  

I was prepared for the nausea, the exhaustion, and the hair loss. I was not prepared for The Taste. 

After a recent chemotherapy infusion, I tried to describe the sensation in my mouth and how it affects my appetite. “Imagine putting mustard on everything you eat,” I said to my husband. “Even ice cream.”

Except The Taste is not like mustard. It’s like cotton balls that have been soaked in aluminum and old orange juice. It’s like not brushing your teeth for five days, popping an unwashed retainer in your mouth, and then rubbing a stale cracker over your gums. It’s like licking an old sponge covered in paperclips. It’s the taste of something gone horribly wrong. 

Several years ago, when my father was dying, his body took on a smell that I could only describe to close friends as corpse-y. He seemed caught between two worlds, the world of bagels and traffic, and the world of after. I sometimes cleaned his gums with a Q-tip dipped in mouthwash. 

Now, in the middle of the night as I gargle with baking soda and salt to help avoid mouth sores, and then with Listerine to try and escape The Taste, I think about my dad’s breath in those last few weeks. And then I think about my own body and how quickly it has changed. My breast tissue has been replaced by expanders, which are holding the place for future implants. In my armpit is a scar from the removal of several lymph nodes. I have a port in my chest that looks like a rogue Adam’s Apple. Except for my eyebrows, my hair is gone. And my mouth tastes like the lid to the compost bin. 

I am trying to maintain a sense of curiosity about these changes, focusing on what my body can do as opposed to what it looks like. When not curled up in a fetal position with nausea, I can still walk, stretch, swim, and dance. Apart from my breasts, everything else is temporary. These scars will heal, the port will come out, my hair will return, and The Taste will fade away. 

While my mouth tastes like copper and old yogurt, it is difficult to enjoy food. Last night I topped my turkey chili with extra jalapeños. My mouth was on fire but I felt elated to be experiencing a different sensation. Then later, while I was watching Grey’s Anatomy and sipping ginger tea, The Taste returned with a vengeance. “You thought you could burn me away,” it snickered. “Nice try.”

Chemotherapy is the use of chemicals to treat cancer, and The Taste is the byproduct of the unavoidable damage to the cells in my mouth. “But I don’t have mouth cancer,” I want to say to the toxins traveling around my body. “Stay below the neck.” But chemo is a social butterfly who wants to meet everyone at the party. So here I am, chewing peppermint gum while halfheartedly baking a chicken, marveling that one day I will struggle to remember this.   

My middle name is Ilse, after my grandmother who sold her belongings for diamonds that she hid in the soles of her shoes when she left Nazi Germany with my father and his baby brother. She had breast cancer. Died before I was born.

My tumor was on the side of my left breast. I wanted everyone to touch it. I kept offering as a teaching moment. “This is what cancer feels like,” I’d say. 

The tumor was two centimeters. Peanut-sized. My daughters were once peanuts and now one has a boyfriend and the other has blue hair. This tumor won’t get a driver’s permit because it’s gone now. As is the other one they found after they opened me up and removed all my breast tissue. 

I learned about the cancer one month before my first novel came out and scheduled my double mastectomy for the week after the launch. People asked me what the book was about. “Secret keeping,” I’d respond. 

People keep telling me it’s not fair. But it is common, and so why not me? One in eight women gets breast cancer. It’s not even that interesting to have it. Everyone seems to have breast cancer or has a sister, mother, or close friend with breast cancer. 

After my diagnosis, my family took me to Sonoma for the weekend where we played games, soaked in a hot tub, and drank gin and tonics. When we played Celebrity and my mother got Kristin Wiig, she looked at me in horror. Because, you know, wig.

The surgery took six hours. When my surgeon visited me in the recovery room, she shared that each of my breasts weighed the exact same, a first for her. For a moment, the strange delight of this trivial news overshadowed the pain and pressure I felt with each inhale. 

The moderator of my support group put it bluntly: A double mastectomy is a trauma. And your brain might respond as such. My dreams have been frightening. The other night I was running through a city in painful high heels, desperately thirsty, grabbing at glasses of water that kept breaking in my hands.

Last month, I started chemotherapy. Earlier this week, the hair on my head started coming out in clumps. Yesterday it covered the shower floor like a shag carpet. I had underestimated how awful this would feel and sobbed into my husband’s chest. Later that day, I sat in a salon chair as my hairdresser ran the clippers over my scalp. She complimented me on the shape of my head and refused to take my money.  

Due to the aggressive nature of my cancers (plural), I am having 16 infusions of chemotherapy. This is what I’m doing this year. I am also swimming, planning a B’not Mitzvah, and watching The O.A. And when I am not suffering from a kind of nausea I can only describe as absurd, I am writing a new novel. This one is about a woman whose life may or may not be a figment of her imagination.