A Breast Cancer Notebook: My Story in Paper and Glue

Yes, that's my hair

This is the cover of the notebook I created during my nine-month treatment for cancer. My hair began falling out in the marble bathroom at the Neue Galerie on Fifth Avenue in New York—not in giant, scary fistfuls, but about 10 wispy strands at a time. I knew then it was time to get my head shaved; it had been two and half weeks since I began chemotherapy.

Me and Mr. Clean

I had found the lump while showering. The first image that popped into my head was Mr. Clean. What will I look like bald? And who will I look like? Telly Savalas? Yul Brynner? Homer Simpson? G.I. Jane?

The hospital and my first tests

Our family practitioner immediately sent me to the St. Vincent's Comprehensive Cancer Center in Greenwich Village, Manhattan, only eight short blocks from our apartment.

I was scared that first visit. Would there be gruff men with no bedside manner? Moaning patients? Dead plants? To my relief, three friendly men greeted me at the front desk, in ties and jackets. St. Vincent’s CCC has some of the qualities of a spa: a perfectly curated contemporary-art collection, thriving plants, cut flowers, wireless for your laptop, little sandwiches on trays, herbal teas, and a friendly, professional staff who remember your name and laugh a lot.

I had my first round of tests, beginning with a

mammogram. Who knew a breast could be as flat as pie crust? Then came the sonogram, where they slather your chest with an aspic-like substance and run a wand over the lump area in a grinding-up-spices-for-Indian-food motion.

The probing continues

Next came an EKG, followed by an echocardiogram, lung X-rays, and six vials of blood drawn.

The language of investigation

How many M's in mammogram? You learn a lot with this disease.

My tumor is staged and removed

The first two tests, which confirmed that my tumor was malignant, didn’t hurt. But the radioactive shot, which allowed my surgeon to locate and biopsy a first row of lymph notes, felt like an injection of acid. It was the only moment in the entire year of treatment that anything really hurt.

In the St. Vincent’s CCC recovery room, Dr. Bernik brought great news: Nothing had spread to the nodes under my arms. This was early stage cancer—stage IIa out of IV. But because my tumor was large (3 centimeters) and quick-growing, I needed

chemotherapy and radiation. My tumor was estrogen- and progesterone- receptor (ER/PR) positive, meaning the hormone replacement drug I was taking encouraged growth. So I stopped it.

The surgery was outpatient. After the good news, a nurse presented me with a woven basket full of cookies and treats. I took a pill for something I don’t remember because I was transfixed by the cookies. The nurse said I would throw up (which I did, the only time, into a nicely designed barf bag). She also warned me that my pee would be blue (which it was).

What happens afterward?

The surgeons don’t know exactly what they’ll find during surgery, so they prepare you for the worst side effects, meaning you might not be able to lift your arms afterward.

You need front-button shirts, slip-on shoes (in case you can’t tie shoelaces), front-hooking bras, and no contacts or makeup before surgery. My husband, Glenn, stocked the house with DVDs and bottled water. The staff also warned me that I would have "drainage,” which would be heavy and then taper off. We watched an operation on the HBO series Rome, in which the surgeon warned the family about pus. For me, it wasn't so bad: I was able to lift my arms.

Discharge!

Yes, I had it, and it got over everything.

How I rated

Some doctors say breast cancer patients don't need the full chemo treatment (especially if theirs was nabbed at an early stage.

Dr. Paula Klein, my chemo doctor and a dead ringer for Emma Thompson, and clinical nurse Mary Ann Juliano, encouraged me to sign up for a national cancer

research study, which I did. More vials of blood and tissue went to a lab in California. My number came back at 35; I needed a 24 for chemo to be a toss-up. Dr. Klein suggested everything but the kitchen sink just to make sure.

And how my heart rated

Before chemo, I needed another test to see if my heart could handle the stress of the poison. This was a MUGA scan, a multiple gated acquisition. This produces a rough measurement of the percentage of blood pumped out of your heart with each beat. More radioactive injection, but no acid sting. My heart registered a 43%, and 60% is normal. But I qualified.

The beat goes on, normally

My heartbeat was normal too. So all was ready for chemotherapy.

Eight visits to the cancer spa

I was never nauseated during each of the eight chemo sessions, perhaps because of the three $110 pills I swallowed—one before chemo, and two during treatment. Chemo involved many pills, blood vials, and drips in each five-hour session. I always invited a friend along for bedside dinner and a movie on my MacBook. Jean-Luc and I dined on Balducci's pâté, cheese, fruit, and Young Frankenstein. Rachel and I watched Grey Gardens with Caesar salads and fresh pineapple.

Avoid sharp objects

The chemo floods the circulatory system to kill any cancer cells lodged or floating. This poison weakens the immune system and can expose the body to a variety of bacteria and viruses—meaning, if you’re a klutz like me, you have to be extra careful not to cut yourself with knives, lest the wounds get infected. (Years ago, I sliced off the tip of my index finger with an X-ACTO knife, a common accident among every artist I know.)

I also had to be careful around the stove (no burns), the sun (absolutely none), restaurants (no sushi or raw food), and, most tragically, the nail salon (no pedicures). After four months, my feet resembled fresh ginger bulbs.

Eyelash spiders

After two weeks, the hair started going. After my shave, I opted for what I thought was the Jacqueline Bisset wig. Anna Commitante, the former director of City Hall Academy where I worked part-time, said, “Shalom, darling,” when she saw me: I looked like the wig-wearing Orthodox wives in Williamsburg, Brooklyn.

I had two Bissets, so I wore one and took the other to Morgan, who owns L’Atelier in the West Village. He said, “Vee vill make your leetle doggie look chic and French.” The Anna Wintour/Louise Brooks look.

It didn’t occur to me that all the hair goes. The eyelash and eyebrow disappearance turned me into Alien Girl. I spent two hours at Faces cosmetics getting my cancer-face makeover. The false eyelashes fell off during the day. I would be startled at a little black spot on my cheek that looked like a baby spider.

Infection strikes

St. Vincent’s has a 24-hour nurse hotline number, which we wrote in gigantic numbers on our kitchen blackboard. If my temperature spiked, I was to call and check in to the hospital: Fever signaled a possible opportunistic infection.

I spiked, called, and checked in. At the hospital, Glenn and I sat on one of many gurneys lined up like bumper cars in the ER room. Next to us was a large man in a neck brace gasping for air. There was a skinny goth duo.

The team of specialists determined that I had a staph infection and shingles, both common among cancer patients. I was quarantined for a week, but felt great. I had a room with a cable TV, gourmet food from Glenn, and a view overlooking lower Manhattan. Drugs cleared up everything.

Hickey knuckles and other side effects

Side effects can be daunting: exhaustion, nausea, depression, blurred vision, blisters, aches, hair loss, dry mouth, blue urine, diarrhea, constipation, loss of nails, tingling or burning in hands or feet. And my favorite: weight gain.

I was lucky, though; nothing too weird happened. My vision was blurry for a few weeks; I simply squinted. Glenn bought a back vibrator to help my aches, and buzzed my back for hours on end while we watched American Idol. I lost my hair, but I looked very French in my wig.

The oddest side effect was hickey-like dark knuckles, elbows, knees, and toe joints. I thought I was just smudged from art paint, so I scrubbed and scrubbed. My spirits were good, though; I kept working and made this book. I wasn’t up to many visitors, dinners, or traveling.

I always wanted a chest tattoo

After chemo came radiation with Dr. Zoe, another gorgeous, smart, athletic woman.

Radiation bombards the area affected by cancer. I received four dot-size permanent tattoos which marked where the radiation beams had to be aimed. I had 33 sessions, every weekday. The beaming itself lasted about two minutes, so I was in and out.

While waiting for my turn, I recognized the regulars, many far worse off than me. Giant-bulging-red-eye lady, purple half-neck boy on metal crutches, and doll-clutching Alzheimer’s grandma in a wheelchair.

Enough of the West, let's look East

Hari om, hari om, hari, hari, hari om

is a yoga chant in Sanskrit meaning harmony. My neighborhood yoga studio caters to all flexibility levels, from the triple-jointed to me, the lock-limbed. Even though much of the session requires reclining and sitting on the floor, I felt limber, balanced, calm, invigorated.

St. Vincent’s CCC offers teas and poultices to complement Western scalpels and radiation. Eastern medicine specialist Ooi-Thye Chong sent me to Chinatown pharmacies with a grocery list written in Chinese.

I bought dried flowers and berries to make a urine-colored tea that cools the body. I made poultices of rags dipped into a strong black tea and plastered them onto my radiated spot (easy to find from the tattoos). Like vinegar, tea draws out heat, but smells better. For weeks we had brown rags drying around the apartment.

Patient T

Midway through the pills (176), tests (mammogram, sonogram, echocardiogram, MUGA, MRI, CAT scan, 10 blood tests, bone density, X-ray) and treatments (surgery, chemo, radiation), a hematologist happened to find that my body produced an unusual kind of T cell.

A T cell is a type of white blood cell that plays a major role in the body’s immunity. I signed over a keg of blood and snippets of tissue to a national cancer cure research team.

In all, treatment lasted seven months. I am now down to one cancer pill per day for five years, Arimidex. That’s the A floating among the other drug symbols in the artwork. Arimidex lowers estrogen levels, which may slow the growth of breast tumors that need estrogen to grow.

How breast cancer changed me, and didn't

I am a content, happy person by nature, so I adjusted well at every stage. My husband and I get along better, perhaps because I’ve relaxed more about life. I’m closer to my older sister, Joan, in St. Louis; we talk four times a week and she is taking Glenn and me to Paris in the spring.

It was also a perfect chance to sever relationships that sucked the energy out me. During treatment, we rarely had people over, which was a drastic change from the four-course authentic Roman meals I used to cook, or the 75 people we had for one Christmas party. Now I cook less, or at least more simply, and only the people I really enjoy come over.

About the approach and materials: Before cancer I spent every summer for seven years in San Cristobal de las Casas, a small colonial town founded in the 1500s, in the mountains of southern Mexico. I painted, drew, printed, daydreamed. Friends sent me this handmade book from Vietnam. I used tissue and varnish for the images.

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