Betty Reed author activist traveler pianist

Betty Reed Health Advocate Breast CancerCAN-CER-VIVE

BY ELIZABETH ANN REED

It’s domestic duty day: food shopping, dry cleaners, returning overdue books. I make my one daily cup of coffee, then suck on a square of dark German chocolate, letting it melt on my tongue during slow slurps while I collect the mail from our front entrance. There’s a birthday card for my daughter, Annierose. Birthday. Shoot. My sister’s birthday was yesterday. I look up her work number.

“Hi Christine! Happy belated birthday! Did you do anything special yesterday?”

“Well,” Christine says quietly, “Actually, it was kind of a drag. Can you hold on a second?”

“Sure.” As I start to unload the dishwasher I hear the muted sound of her office door closing. When Christine wants privacy at work, I know something is wrong. My abs do an involuntary crunch.

“I had an ultrasound done on my right breast.”

My hand, holding a dinner plate, goes limp. I know what having an ultrasound means. They’re looking for something.

“There were a couple of unclear spots that looked like cysts on my MRI and presented on the ultrasound as well, so the doctor recommended doing some biopsies.”

My body jolts, not from the coffee, but from the memory of the staple gun piercing my own breast for a biopsy. “How many biopsies?”

“Three. The mammogram was fine.” Her voice wavered. “If it hadn’t been for you, my doctor would have never done the MRI.”

“Thank God she did,” my own voice trembling as I feel the double-edged anguish of wanting—and not wanting—to know if there is something that looks suspicious.

 

Only eighteen months prior, I’d received a call from my gynecologist.

“Betty, this definitely felt like a fibro adenoma during your physical,” she said. “But your mammogram was fine. I think we should follow up with an ultrasound just to make sure. It’s not urgent. You can schedule it at your convenience.” I pushed the holiday music I was choosing for my piano students aside, to locate my appointment book. “You’ll have to go into Boston because the Lexington facility doesn’t have the equipment.”

“It’s no problem.” Patients came from all over the country for medical treatments at Boston hospitals. A twenty-minute ride was nothing to me.

A week later, I was lying on the exam table in the dark ultrasound imaging room, my breast gloppy from the gel the technician squirted on in gobs. Out of the corner of my eye I could see black spots, white lines, and gray amoeba-like shapes on the monitor. I remembered the joy associated with previous ultrasounds—the fuzzy images of my babies-to-be and the sound of a tiny heart beating. For this ultrasound my emotions were frozen, waiting. The Beethoven Sonata my student was working on wound wearily through my ears.

I waited for the technician to return and to tell me the ultrasound was fine, but a doctor entered instead.

“Ms. Reed, why don’t you sit up so you’re more comfortable?”

I complied, draping the soggy johnny loosely across my chest.

“What we see on your ultrasound does not look suspicious, but we should monitor it closely to document any changes. Normally, I would see you in six months, maybe three, but to be honest, if it were me, I’d have a biopsy. Just to make sure.” Just to make sure. The same words my gynecologist used.

A cold wave of apprehension rose from my abdomen, spreading to my chest, neck, and arms. My fingers turned to icicles. “Yes, I’d want to know, too,” I said. “I’ll schedule the biopsy.” But I really didn’t want to know. My life was transmogrifying, and I couldn’t stop it. One second I was wondering what to make for supper, the next second I was trying to ignore that word—tumor. The first available appointment at Beth Israel wasn’t until late January. Five weeks of waiting, just to make sure? I called the Hoffman Breast Center in Cambridge. They had an opening in two days. I was lucky my insurance plan covered most Boston hospitals. What if it hadn’t? I couldn’t imagine having to go through the holidays in a constant state of anxiety. But many women—who don’t have insurance, who don’t have access to world-renowned hospitals, who don’t have the option of taking off work to have tests done—do wait. Until it’s too late.

Betty Reed Health Advocate Breast Cancer

The waiting room was small. Seven other women sat, waiting. Waiting to have their breasts compressed between cold metal plates, waiting to wipe off the sticky ultrasound gel from their armpits and chest, waiting to hear the doctor say, I’m going to give your four needles of a local anesthetic. It will probably hurt, but then you shouldn’t feel any more pain. Which pain did he mean? The pain of the piercing needle? The pain of having my breast pushed, pulled, prodded, pricked? The pain of thinking that someday my ten-year-old daughter might have to suffer through this torture, too? Women waiting for the biopsy needle that sounds and feels like a staple gun. Waiting for the silent throbbing pain, despite the anesthetic, to fade. Waiting for the ice-cold fear in our guts to melt. Waiting to hear everything would be fine. But it wasn’t. Not for me.

For weeks, I spent countless, sleepless hours on the computer researching and learning a new language: differentiated, HER2 negative, hormone positive, dissection, adjuvant therapy. I had a bone scan, CT scan, and chest x-ray to make sure the breast cancer had not spread. I spoke with and saw my gynecologist, my primary care physician and, for the first time in this new routine, the breast surgeon.

She found the small lump on my breast at the nine o’clock position.

“Wow, this really is small. And it does feel like a fibro adenoma,” she said. “Who discovered the lump?”

“My gynecologist.”

The surgeon’s eyebrows rose above the rim of her glasses. “You should thank her for saving your life.”

After six weeks of radiation, a lumpectomy which left surrounding margins clear of cancer cells, and a hormone medication regimen, I was able to move past the fear of dying and started living again.

But, this is not about me; it’s about Christine. I gulp down the last of my cold coffee.

“When are the biopsies scheduled?”

“Actually, I had them already,” Christine says. “They happened to have a last-minute cancellation, so I took it.” I picture the round circular bandages, new bra padding.

“When will you get the results?”

“I scheduled an appointment with my doctor for next week.”

“Seven days of waiting?”

She exhales into the phone. “I’ve had so many of these cysts over the years, and they all turned out to be nothing.”

I want to reassure her, but the memory of false hope is still too raw. I have my own checkups soon, which always reopen that closed door to the dread, the fear of finding something. I can’t bear to confront death, for me or for my sister. I offer a feeble platitude and hate myself for it. “I’m sure it’ll be fine, Christine.”

“By the way,” Christine says, “We need to plan Annierose’s birthday sleepover weekend.” I’m grateful she has changed the subject.

“Great. She’ll be excited. I can’t believe she’s turning eleven.”

A drizzle of soft rain showers my perennial garden. Two baby buds sprout from the pink rosebush, a gift from my parents when Annierose was born. On her fourth birthday, after a winter of arctic temperatures, there were no blossoms. But the next year her brother Daniel was born and the rose bush bloomed again. I know hope can be dormant; in times of stress my modus operandi has always been to focus on the present, to push the hoping and wishing and dreading the future into a mental hibernation. The lure of birthday party planning is a welcome distraction from worrying about the possibility my sister might have to suffer the agony I experienced.

“Where does the time go?” Christine asks. “What’s her theme this year?”

“Harry Potter. In a week and a half, we’ll have thirteen wizards in our living room. I’ll look at the calendar and email you some possibilities for the sleepover, okay? Stay calm, Christine.”

“You bet,” she says. “Cool as a cucumber.”

We both snicker. Christine hates cucumbers.

Betty Reed Health Advocate Breast Cancer

 
Every six months I have a mammogram and see my gynecologist and surgeon. I drag my old X-ray films from where I buried them in the darkness behind my desk. The receptionist at the Breast Cancer Center ushers me into the crowded waiting room and knocks on one of the two metallic changing room doors before opening it.“Looks like this one is empty. Go ahead and change from the waist up. Put on the first johnny with the opening in the back, and another one over it, opening in the front. You can put your belongings into any locker with a key.”I pull my shirt over my head. I can almost stretch my left arm straight in front of me. The scar from the lymph node extraction still tugs at my carved-up armpit, but not as tightly as at my last mammogram six months ago. I remove my regular Victoria’s Secret bra, the one without the extra padding. The quadrant on my breast which was burned during six weeks of radiation has long faded from radiant red to a light tan. The two-inch scar from the lumpectomy sits on a ridge. I no longer have trouble sleeping. The exhaustion of radiation was a sure cure for insomnia. I put the cotton johnny gowns on, as instructed, fold my clothes and place them in the locker. I glance in the mirror with my hand on the saloon door. My shiny purple earrings clash with the stupid johnny. Come on, smile. My eyebrow arches, my lip bends upward—all on the same side of my scars. The other side waits. I push the door open.Women shuffle their feet under their chairs as I pass by, aiming for an empty chair in the corner, the last of eight. The train of my johnny knocks over the “Self-Exams Save Lives” brochures.We look like droopy-caped wizards. I envision silent speech bubbles above each woman. Is the curly gray-haired woman, who is flipping through an obsolete news magazine, worrying if she’ll have to tell her grandchildren that Nana has breast cancer? Does the middle-aged woman, who is anxiously mashing her gum with wide circular jaw motions, have a family history of cancer? And there’s me. Statistics are random, but what if I’m the one out of the eight—again? And what if Christine has breast cancer, too? Does that change it to two out of eight? What if we have the BRAC1 gene? What if—A tall technician enters and calls my name. I drop my magazine onto the table and follow her into the freezing room with the mammogram machine which always looks like a giant waffle maker. I breathe in deeply and let out a slow breath as the compressor plates squeeze unmercifully tighter.

“Okay,” the technician calls from the corner of the tiny room. “Hold your breath.”

Click. Whirr. The compressor plates release with the whoosh of a deflating balloon. After three regular pressings and four more custom designed pressings which zoom in on the tender lumpectomy quadrant, I am told to have a seat in the waiting room while the doctor reads the films.

“I can’t believe it takes four days to get the biopsy results,” says a distraught woman in her twenties. “My sister is so anxious.”

I feel my jaw clenching. I want to tell her it’ll take two days if it’s malignant. But if your doctor doesn’t believe the preliminary report, it’ll take four days, and if you prefer getting the results in person, it’ll probably take seven days. I’ve only had breast cancer once and already I know too much. But I’m one of the lucky ones. Many women don’t have the option of knowing and treating and surviving.

The memory of all that waiting—the leaden limbo of dormant hope, numbed emotions and automaton action—sits on my shoulders, threatening to drag me down a twisted tunnel of depression. I fight it off. I lean over the bucket of Cadbury eggs and marshmallow peeps, unwrap a small chocolate bunny and chomp off his ears.

“Hell,” I mutter, “I’ve earned this one.”

The woman next to me laughs. “You’re right.”

She digs into the candy. Another admits, “I was hoping somebody would start.”

My technician calls me back into the freezer.

“Your mammogram is fine.”

I feel relief, but it’s a guarded relief, because my mammograms have always been fine, even when I had a tumor. I leave in such a rush, I forget my X-rays and have to return to get them. At home, I shove the films behind my desk. Out of sight, out of mind. Well, sort of. The nagging knowledge that Christine’s doctor was proactive enough to order an MRI instead of a mammogram gnaws at any complacency I’d like to own.

 

A few days later, I watch a thin squirrel digging a hole in my sodden backyard mulch. The phone rings and draws me reluctantly back to my desk, my laptop, and the music software review I have to write. But first, the phone.

“Hi, Betty Ann? It’s Christine.”

“Did you get your results?”

“It looks like—” Her voice cracks, “I’ve joined the club.”

My fake complacency, my onerous limbo shatters. “Oh. Shit.” I start to cry.

“That’s what I said when the doctor told me,” she says through sobs. “It showed up on the MRI, not on the mammogram.” Her doctor’s preventive action saved her life. My surgeon doesn’t think I need an MRI.

“How big is the tumor?”

“Actually, there are several.” Several? My hands tremble. “The largest one is two centimeters.”

I forget the size of the children I delivered, but I never forget the size of my own tumor. Christine’s is bigger. I break out in a sweat. The blood drains from my face. She will need a mastectomy, chemotherapy, and hormone therapy. She will lose her hair, as if that’s important when she might lose her life. I wish I had a wand to wave it all away. Like many women I want to retreat into a fantasy land where magic can heal and turn confrontation into a calm conversation. Instead I rouse my dormant hope and force myself to believe in a complete recovery for Christine. And I resolve to renew my request for an MRI and genetic testing—a request which will become a demand if not granted.

 

Shortly after Christine’s diagnosis, I have my other checkup, this time with the surgeon. I dig out the mammogram ex-rays and pack them in a bag with a shopping list of items to buy for Annierose’s birthday party. In the consultation room the clock ticks off the seconds until the surgeon appears.

“Do you have any pain? Anything look or feel different?”

“No. Nothing I know of.” I clear my throat. “My sister, however, was recently diagnosed with breast cancer.”

“Oh. That’s unfortunate,” she responds. “Is she getting good medical care?”

“Yes. The prognosis is hopeful.”

“Then let’s take a look.”

“But first I want to tell you her tumor showed up on an MRI. Her doctor ordered it because I had breast cancer. I would like to have an MRI.”

“Let’s discuss it after the exam.”

Why not now, doctor? I lie down on the cold exam table, covered with a long sheet of thin paper that crinkles as I stare at the suspension ceiling. I want to trust my surgeon will give me the best care; after all, I trusted her with a knife to my breast. After an efficient physical exam and some scripted observations, she tells me everything looks fine. I can return in six months.

Hold on for a second. We are not in a classroom where you can dismiss me and send me home. I sit up. “My sister’s tumor appeared on the MRI and not on the mammogram,” I tell her. “Shouldn’t I have an MRI, too, along with my regular mammogram?”

“I don’t see any need to do an MRI. It’s not a recommended screening device for cases which are not high-risk.”

Not high-risk? Once you get breast cancer, do they bump you down to the end of the chorus line? Is high-risk a designation only for women who’ve never had breast cancer?

“You can get dressed now.”

All my other doctors leave the room while I put my clothes back on. Not her.

I turn my back as I put on my bra and shirt. “You didn’t recommend having the genetic testing done in the past.” I straighten my shoulders and turn to her. “But I want to have it.”

Her owl-like eyes pierce through her eyeglasses. “I don’t see why you want that.”

I scream silently. Because I want to know if I have embedded a potentially lethal gene in my daughter’s DNA! Why is she so stingy with tests? Is she getting a kickback from insurance companies?

“I have a daughter,” I say tersely.

“Yes. But the chances of testing positive are about five in one thousand.”

Five in one thousand. Isn’t it a covert way of saying one in two hundred? Invisible snare drums beat an angry rhythm in my head. I’d prefer the slow rhythm of a ballad. I want to wave goodbye, close the non-existent curtain, and abandon this scene so I can plan the activities for Annierose’s Tri-Wizard Tournament birthday party. Harry Potter’s magic world entices me to drop the thoughts of having the BRCA gene. I want to trust the surgeon’s statistics. But she is manipulating numbers and disregarding my requests. I was one of the eight. Who is she to determine I’m not one of two hundred? She will not coerce me into compliance. She will not design my destiny.

“Why did my sister have an MRI as a screening device simply because I had breast cancer? And why did her doctor recommend the genetic testing even though her only child is a boy?” The angry rhythm is modulating to a steady march.

The surgeon looks up from my medical chart, props her elbow on the tray, and points her pen at me, like Professor Snape about to cast a nasty spell. “I don’t know your sister’s history,” she says evenly. “MRIs are expensive and insurance companies are reluctant to approve them. MRIs often lead to unnecessary biopsies.”

The marching rhythm persists. I swallow the temptation to be the timid patient and to accept the doctor’s supposed superior judgment.

“I don’t want to have any more biopsies than I need,” I say. “But how can I trust a mammogram which has always been negative, even when there was an existing tumor?”

The surgeon shuffles the papers in my file until she finds what she’s looking for. Then she is quiet for a few seconds. “Since your mammogram was occult, I can submit a request for an MRI this time. But you’ll probably have to pay for it yourself.”

Occult. It sounds like dark magic. I remember looking the word up when my radiation oncologist talked about the need to continue with mammograms, even though mine was occulthidden, difficult to see, concealed.

“It’s the same situation with the genetic testing,” she continues.

I am seething. I’ve seen the exorbitant costs hospitals charge. I am fortunate that I can pay for a test if needed, but my sister did not pay for her MRI or for her genetic test. And neither will I. I call the surgeon’s bluff.

“Alright. Then, let’s start with the MRI, even if I have to pay for it.”

 

After I leave the surgeon, I drive directly to Party Supplies to buy Harry Potter paper plates, a Gryffindor tablecloth, and Mad Lib books to fill the Hermione loot bags. Pay for my own genetic testing? Is that what she tells all her patients? I’m lucky I was born a rebel, that I defied my parents’ strict rules, that I rejected the Catholic church’s dogma, that I stood up to a sexist boss. It was good training for this medical journey I’m on. But I’m sad and outraged, thinking of all the women who don’t have access to this knowledge or my privilege.

There are no small Harry Potter banners or candles to decorate the cake. I’m not up to designing his face with tiny tubes of frosting. Elmo, Tinkerbell, Mickey Mouse—those were manageable. Not Harry Potter.

“Do you have any Harry Potter cake decorations,” I ask the skimpy goateed teenage clerk.

“No, ma’am, we don’t have anything like that,” he says and returns to the register. Ma’am. Mammogram. The surgeon’s words return. I can submit a request for you this time. Does she think I will say “Yes ma’am” to having an MRI only this time, and not any other time?

I choose a thick tube of black frosting to design a haunted building that will hopefully look like Hogwarts, and a purple tube for the school’s windows. Then, blue spray mist for the sky, green for the grass. I spy a package of stickers, Harry Potter’s eyes staring silently at me through his round glasses. Harry’s extended arm points at me. His eyes pierce through his glasses, my glasses, and lock on mine. The angry rhythm returns, this time on kettle drums. I’m not a wizard; I have no magic wand. I can either watch the movie from my spectator’s seat or I can write my own script. And my actions will affect my audience, my daughter, Annierose. I refuse to allow an owl-eyed surgeon to restrain my rights.

My hair goes limp as my head sweats out my fury.

Four words morph into a script I am already writing in my head.

Can-cer.

Can-cer-vive.

Can sur-vive.

I can sur-vive.

I drop the pack of stickers into my shopping basket.

I’ll get my MRI.

I’ll get my genetic testing.

And then I’ll get a new surgeon.

Betty Reed Health Advocate Breast Cancer

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Rumpus original art by Dara Herman Zierlein