In the cabinet under the kitchen sink is the Gatorade bottle, full of used syringes, that somehow I can't throw away. Veterans of other wars have their monuments, and I have mine. Under the kitchen sink.
When I felt the worst during chemotherapy, I tried to sip diluted Gatorade. And between infusions, I gave myself daily shots to help my blood regenerate more quickly, to withstand the next chemotherapy course.
What was described as a "wisp of a thing" in my breast had exploded like a Fourth of July firecracker, most likely activated by estrogen that I had started taking to treat menopausal symptoms.
My friends, who have been with me every step of the way, came quickly to my side. We sat together, stunned at first. We discussed treatment recommendations and identified personal and business matters that needed to be addressed. I took a leave of absence from my psychology practice, transferring my clients to other therapists. The loss felt like another chunk out of my flesh.
My surgery was followed by six months of intense chemotherapy and seven weeks of high-dose radiation. Then came concern that cancer might have traveled to my ovaries, so there was more surgery. I'm recuperating now from a hysterectomy, buoyed that no more cancer was found. I will take the anti-estrogen drug Tamoxifen daily from now on. And soon I hope to return to the parts of my life pushed aside by this yearlong battle.
All along the way, I found it useful to write about my cancer and treatment. In fact, I found it necessary.
As chemotherapy was to begin, my cousin Gerry came out from Colorado to be with me. A psychiatrist friend observed that Gerry was as important as any chemotherapy, and I'll drink to that--anything but Gatorade.
Gerry has been home four months now, but I still find signs of her, little Gerry artifacts. Like a note I came across telling me of a man helpful in locating references at the UCI medical library.
We were frequent library patrons, seeking primary sources--studies I could read and use in my decision-making.
My cancer treatment became my work, in a way. For six months, life was structured by chemotherapy infusions. I quickly came to know their rhythm and their aftermath.
The anti-cancer drugs were administered intravenously, every two to three weeks. Infusions varied in length depending on the chemicals. Some lasted two or three hours, some about six hours. Most I received in an "infusion center," a part of my oncologist's office. I was hospitalized for one, my initial exposure to a chemical with a higher risk of allergic reaction.
I felt safe in the shelter of aggressive chemotherapy, as though while there I could not be touched by more disease or by death.
And I felt at a loss when it was over.
"Of course you want more," breast oncologist John Link said in late April. "You would have me give you chemotherapy forever. But it's time to stop." Time. I remember a blackjack pit boss, somewhere in time, asking me: "Don't you know when to stop?"
Veins had never before been important to me. I took them for granted, like eyebrows. After a few infusions, however, my veins began to sclerose--to become hard and inhospitable to the chemotherapy needle.
And we had only my left arm to use because of the lymph node removal in my right arm. We made it through the full six months, just made it, finally using a valiant little vein in my left hand.
One day at the infusion center, several of us were receiving chemo and watching a TV show. Someone commented on the attractive woman being interviewed on screen, and I said, "Sure, she's pretty, but I wonder what her veins are like."
At the center, you could count on discussions about wigs, hair and how hair was growing back. Is it curly or straight? Is the color different? Is it thicker than it was, will it fill in on top here, in front?
"There's an interesting new man in my life," I told Gerry one day. "I'm looking forward to going out with him."
"I hope he's not bald," my cousin replied thoughtfully, and I reminded her I was hardly in a position to be particular about that.
Three days after I started chemotherapy, my friend Phil came over to help around the house. When he entered, I was lying on the couch, dehydrated, nauseated and drenched in sweat. He kissed me twice on the forehead and then went to work on lamps, toilets, the dishwasher, an answering machine. Whatever Gerry said needed fixing.
Several days later, Phil called to ask if there was anything else he could do. I told him I was better, Gerry was back in Colorado for a respite, and I was sorry he had seen me so sick. "A man should see a woman when she first gets up, at her worst, before he considers a commitment," he said. "So, will you marry me?"
Gerry called from Colorado 10 days later. She had a cold and would not return the next day for my chemotherapy. I panicked. Last time I could barely get out of bed, could not be alone during those difficult post-infusion days. Without Gerry here, Dr. Link will hospitalize me, I thought.
With my heart in my mouth, I started calling friends. Laurie first. She was recovering from a cold too but would wear a mask and gloves around me. She could be here most of every day, and every evening. She wanted to be with me. Donna too. Just let her know and she would be here.
I filled out a schedule for the week--my dance card. Nancy, Joan and Joyce were available any time, day and night. They made it seem like a privilege to be asked.
Many of the anti-cancer drugs used in chemotherapy affect rapidly dividing cells of all types; their quarry, unfortunately, is not limited to cancer cells. Among the normal cells that are affected are hair follicles. I knew that a few weeks after my first infusion I would lose my hair.
So before chemotherapy started, I began to cut my hair. Each day I cut an inch or so until I was almost bald, by my own hands. I did not want to be surprised by sudden hair loss; over this I would have some control.
I sought control over the nausea as well. This was induced because of drug effects on parts of the brain involved in eating and vomiting, as well as on rapidly dividing cells of the stomach lining.
The first infusion of each chemical combination was the most difficult--we had not yet been introduced--I did not know what to expect. But each new infusion met an eager student in me. I learned to parry with it and in a way to hold my own. To drink and eat the right little things, on the right schedule, so that I did not starve, or dehydrate (once was enough) or throw up. To eat sitting up or standing, never in bed; to stay out of bed as much as I could; keep the heat off and the windows open; to breathe deeply and slowly; relax my muscles, meditate; write, read, talk.
"There's nothing in the refrigerator," Gerry said one day. So I looked: chocolate Shasta, Mason Dots, anchovies, capers. What was she complaining about?
After my first infusion of three chemicals known collectively as FAC, I was unable to swallow anything and became sick. I fared better against FAC in Round 2. Thanksgiving fell three days after that infusion, and my friend Michael came to visit. He would eat only what I did that day, so for lunch we each had four pieces of macaroni. Not pumpkin pie, but how sweet it was.
My nose started to bleed early in chemotherapy, and I bruised easily.
Because my white blood cells were reduced and lymph nodes had been removed, I was at higher risk of infection. I cut a cuticle on my little toe, and it swelled to almost twice its normal size. And an allergic nasal stuffiness, from a dusty meeting room, progressed to a sinus infection and a fever of 102. Antibiotics were required to fight infection that under normal circumstances would not have developed.
I also developed neuropathy. My fingers and hands, toes and feet became tingly and numb. This condition has persisted--the song is over, but the malady lingers on.
In April I tried to play tennis. It was important to me to push on, be physically active. After two minutes on the court, I lunged for a ball, lost my footing (and possibly my consciousness) due to neuropathy, and fell hard. My hip was bruised, my knee bled and I fractured two ribs.
Two months later, the fracture was a source of relief when, after a bone scan, I was able to explain two "hot spots" on my ribs that might otherwise have required further work-up.
When I first met Judy, a chemotherapy nurse, she said the infusion day counts as Day Zero. The worst is usually day four or five. Judy was tough. I had to brave an entire day before I got credit for anything.
Judy taught me to give myself shots to help the bone marrow and blood regenerate between infusions. When I said I'd just watch the first time, she didn't buy it. Thanks to her, I learned to wield that syringe in one lesson. And later, after one of my daily shots at home, I realized I would never hear the phrase "I feel it in my bones" the same way again, would never say it lightly. I felt it in my bones.
With FAC and later with Cisplatin infusions, I lost at least a pound a day for five days. Then I'd work hard to put that weight back on before the next infusion. With Taxol, however, I gained weight. It did not nauseate me, and the high dose steroids I took with it made me very hungry.
They also made me high. For a few days I lived in the eye of a steroid storm--Hurricane Barbara. I simply could not stop. Talking, eating, writing, singing, working around the house. One woman, after receiving the same IV steroid dose I did, told me: "Well, I'm going to wash all the walls and floors now. And in three days I will want to kill myself." In three days the steroids wore off for me too, and I dreaded that crashing depression just as she did.
I made lists of the worst things about high-dose Taxol.
Here are a few: "I've gained 8 pounds in four days; I can't button my jeans because my fingers are numb; I can't button my jeans because I've gained 8 pounds in four days; I don't know where my eyebrows go; I don't care where my eyebrows go; It's a picnic compared to what Cisplatin will be."
Cisplatin was the final chemical I received, and it was the worst. For almost two months after my last Cisplatin infusion, I could not drink water without feeling nauseated. I cheered the day I realized I had drunk water comfortably.
Later, in Dr. Link's waiting room, I saw a young woman with whom I had talked months before as we each underwent chemotherapy. I saw her again and felt a rush of nausea. She had become a conditioned stimulus for me. I wondered whether anyone had that reaction to me.
To get a powerful punch, I elected to start radiation three days after my final Cisplatin infusion. I had first consulted with radiation oncologist Russell Hafer after my breast surgery, so we were ready to roll.
Radiation began with a simulation session during which the precise areas to be treated were mapped on my skin, and templates to focus the radiation received a dry run. The location of my positive lymph nodes required "four fields" of radiation: my breast, upper arm, shoulder, and neck. My killing fields.
Technicians painted targets on these areas with marking pens--drawings I was not to wash off for the duration of treatment. Seven weeks without washing? I would learn to shower without wetting my front.
One day in a restaurant, a waitress noticed my chest, the part that was visible where my blouse opened in front. "Have you been painting?" she asked. I explained that the markings were a kind of radiation map.
She wanted to know whether I had much breast left after the lumpectomy--whether it was smaller than the other one now. I told her--and interested diners at nearby tables--that it was larger. My breast remains red and swollen since surgery due to the accumulation of lymphatic fluid, and this condition will not change. My cup runneth over.
Before each radiation session, I donned a hospital gown and waited in the dressing room--I thought of it as "the greenroom"--to be called for treatment. The daily radiation session took a few minutes, me on the narrow table, right arm over my head. The mold that held my head and arm is in my garage now, atop a box of party decorations.
During week five of radiation--so there would be a permanent record of my treatment boundaries--my chest was tattooed with little marks of India ink. I asked for roses.
As radiation progressed, I felt weak and tired. By late afternoon, I had little energy and went to bed early. But I was never too tired to drive myself to and from Hoag for radiation the next morning. My cousin Gerry, bless her, drives better in Colorado Springs than in Huntington Beach. So I considered driving an important part of my health maintenance program.
Another effect of radiation was red, irritated skin in the treated areas. Most uncomfortable was the raw feeling of my peeling nipple and areola, shooting pains, and aching around my surgery scars. I recall how careful I used to be about radiation, almost never letting my dentist take X-rays.
It's the kind of timing that either happens without planning or it doesn't happen no matter how hard you try. After surgery, oncology consultations, more than six months of chemotherapy and seven weeks of radiation, one day it was over. It was my birthday, and it was over. Talk about a metaphor for a new life.
Before my "total abdominal hysterectomy with bilateral salpingo-oophorectomy," I signed a lot of forms. One said I understood I could no longer have children, and it was OK by me.
I approached the hysterectomy with some trepidation, hoping for no cancer in my swollen ovaries. I also approached it with the confidence that I had prepared for this surgery carefully, meeting with gynecologic oncologist Philip DiSaia several times, as well as with the anesthesiologist. And I prayed.
Surgery was performed through my abdomen; it took two hours, and I was awake.
When we first discussed the epidural anesthetic, Dr. DiSaia said: "It will not affect your thinking or consciousness. You could give a speech on this stuff." And I did. In his words: "You never stopped talking."
Dr. DiSaia talked during surgery too. And Alex, the medical student standing closest to my head, gave me the play-by-play:
"What's he doing now, Alex?"
"Taking out your uterus."
"What does it look like?"
"Kind of like this [making a shape with her hands]."
"What did he say about my ovaries?"
"He said they're grainy."
"Barbara, this is Dr. DiSaia. Intelligent women have grainy ovaries."
Some time during surgery he said: "It looks pretty in here, Barbara. Everything looks kosher." We received the pathology report several days later and it confirmed, in less charming terms, that everything was indeed kosher.
Dr. DiSaia had to leave town, but he called the hospital every day, from wherever he happened to be. The day after surgery, he called from Texas, and I complained about the amnestic effect of one of my medications: "When I awakened this morning, I did not know what hospital I was in. I don't like that feeling."
"I know," he commiserated. "That happens to me a lot on the road."
After my lumpectomy, performed in a Los Angeles hospital, I was told there were many positive nodes--the precise number undetermined, as the pathologist was "still counting them." And I was told to see an oncologist. To be sure I did this part right, I saw five.
I chose skilled, caring physicians who welcomed my participation in treatment discussion.
I obtained research studies and reviews from medical and science libraries, computer services, hospital and pharmacologic research settings, and cancer information organizations. I analyzed available data, often discussed their implications with my breast oncologist and even with the researchers themselves.
After one particularly important treatment decision, the heavens acknowledged the momentousness of the occasion with a torrential rain. It took six hours to return to Huntington Beach from the Breast Center in Torrance. My car floated down the Harbor Freeway; the seats had to be removed and dried, and the carpet replaced.
Even now, as I recuperate from my hysterectomy and feel the luxury of reading a book just for enjoyment, the first one in a year, I also feel a twinge of guilt. I could use this precious time to seek an early "biologic" trial that might save my life if, God forbid, errant cancer cells become resistant to Tamoxifen.
I think of myself as a healthy person. No serious illnesses before this. Fit and trim, I walked several miles a day, took care of myself, saw physicians infrequently.
I've had annual mammograms since age 40, all clean as a whistle. Stellar. During the one last year, I didn't even worry when they took additional films of my right breast. I wrote in my journal: "This might be necessary for a variety of reasons; most likely they want to get good shots, to be thorough." My cognitive therapy training helped me think this way: Be realistic; look at the evidence, don't catastrophize.
The following week, I hardly thought about the mammogram report still to come. Until the afternoon I received the gynecologist's call. And saw the words in my mind's eye and felt them in my chest, pulsating: breast cancer.
Soon after my diagnosis, I became aware of the heterogeneity of this illness. We who have it share little but the name. And my case seemed in a class by itself: The mammogram suggested a small, ill-defined mass that no one expected to have spread outside the breast, even if it were cancer.
But cancer it was and spread it had, apparently due to its estrogen sensitivity. Because of my concerns about the hormone, I had taken it reluctantly, intending to stop in six months.
In fact I stopped in five, the day I received the mammogram results.
Years ago, my father died of breast cancer. A chemist by profession, he was also a photographer, writer, editor, hiker, weightlifter, astronomer and ham radio operator. He spoke many languages and proudly passed for a native in France and Italy.
When I was 6 he took me to the ballet, built a jungle gym in our back yard and taught me to think about how my behavior affected the feelings of others. When I was 7 we edited billboard advertising for fun, planted corn and tomatoes, and discussed my observations on the shyness of 7-year-old boys.
At 17, I entered his alma mater, the University of Chicago, and he came to visit. That night we walked through Hyde Park singing lines from T.S. Eliot's "The Hollow Men." I found my copy of "Eliot's Collected Poems" a while ago and opened it to "The Hollow Men." My margin notes were written 30 years ago:
The essential prelude to any new life is the appearance of a refreshing symbol from the unconscious . . . a new center of energy, the focus of fresh effort . . . Symbol has appeared, only to be lost again; hence the despair.
My father had a heart attack in his late 40s, and afterward he was treated with oral estrogen. Perhaps it would protect men's hearts as it protected women's, it was thought then. By the time his breast cancer was discovered, it had metastasized to his lungs.
In April, while still undergoing chemotherapy, I told my friend and colleague Karen that "when this is over, even more than a vacation I want my work. I'll never complain about wearing a beeper again. I'll wear yours and mine."
Several months after chemotherapy began, Dr. Link talked with me about patient regression and disorientation following a cancer diagnosis. A "regression continuum" could be conceptualized, helping physicians place each patient and thus more effectively discuss treatment and prognosis with them.
I reminded him that the first time we met, soon after my breast surgery, I left the examining room without putting my clothes back on. Perhaps "patient forgets to get dressed" could represent the most profound level of disorientation, Step One on the continuum.
The night my mother passed away, just last year, I came home and wrote about her. As I wrote, I could hear her. She was my editor, suggesting I keep it simple. This spring, the day before Gerry returned to Colorado, we had the unveiling of my mother's gravestone. My friend Rabbi Jerry Cutler conducted the service.
Before she passed away, in the emergency room, I was not allowed to be with my mother. But I entered for a moment, she saw me, and in that moment she said what I would say to her for all eternity. Her stone reads "Hello, Sweetheart."
Time had lost its continuity and flow for me. This feeling began not when I was diagnosed but the moment my mother passed away when, standing in the emergency room, I felt the loss forever of each second gone by, the past of every present.
"But where are your roots?" I was asked by a European reporter during a recorded interview at a psychology convention several years ago. "You've lived in Illinois, New Mexico, California and Oregon. You're no longer married. You have no children. No roots." I told him my roots were my values, the principles that guide me and enable me to accommodate change.
Last October, after breast surgery, I wrote: "My life is changing, but there are some important constants here as well: my inclination to think flexibly, to identify alternatives, to seek varying interpretations in pursuit of the realistic and accurate. These values have guided me from an early age. They will be my anchor as I ride this sea change."
Cooperation is another value of mine, but I sometimes distort the meaning.
I was embarrassed one year by how many salmon I caught trolling off the Oregon coast. In their halcyon days I attended every Laker game and cheered for a good play on either side. Fresh out of college I received the highest score on a national teacher's exam and told colleagues I didn't know what I got. As a kid I won a race and wondered whether I should have waited a tad longer after the starting whistle.
In graduate school, during the Vietnam War, I dated a beautiful guy from Wisconsin. Although he was drafted, his student status would have exempted him. Still, he decided to go, telling me that if he did not, someone else would have to go, and perhaps die, in his place. I respected his decision.
Now I am told that I have certain odds of surviving, and I think of a pool of women: out of those patients with more than 10 positive nodes, say, 20% will survive more than X years.
I must keep correcting myself, modifying the distortion. Each person's opportunity and chances, like each person's disease, is unique and independent of others'.
Someone else will not have to go if I stay.
Gerry and I went to a party on the Queen Mary, a send-off for folks preparing to bicycle across America celebrating Iowa's 150th anniversary. There was appetizing food, loud, Iowa University music, a big crowd in a room that didn't quite hold us, and lots of cheer. "Iowa, You Make Me Smile," the banners and buttons beamed.
The human contact felt good. Men looked at me with interest and that felt good. One man touched too much, brushed against me unnecessarily (he was from Torrance, not Iowa). At other times I would find that annoying, but now it was pleasant. Here is a healthy, handsome person, I thought, and he thinks I am, too. No one can tell. I'm "passing."
I called the doctor's office to make an appointment, and the receptionist asked if I was "one of his existing patients." I pinched myself and reported, "So far, so good."
I struggle with the survival statistics. Soon after breast surgery I made these notes:
"Two thoughts help me confront the dark side of the numbers. First, treatment will be pursued vigorously and thoughtfully to fight for survival and cure. Second, having done that, dying is not failing. I fail if I do not make the most of the life I have, for as long as I have it."
Today as I read this I want to add that while not failure, death would be a hell of a disappointment.
What a day this has been. Time for writing, reading, gardening. For being still. In the afternoon, a walk in Huntington Central Park. I see some orioles--a yellow-breasted male takes my breath away.
I immerse myself in the park's life and remember a poem I found in my mother's jewelry box as I went from room to room in her apartment, touching things, wanting to hold detail, the morning after she passed away. A poem about a day, one day, of all the precious many.
The park is lush now. The ducks have water for play, the great horned owl family moves between the library trees and those near Goldenwest, the rabbits have a full larder and the dogs, thanks to the park cafe, can order off the menu. Parents pushing toddlers in strollers pass me in phalanx, and I feel one with them. And with their children.
I took a test in a popular health magazine recently and learned, after answering its 21 questions, that I am at low risk for developing breast cancer. As Ruth Gordon said upon receiving her first Oscar at age 72, you don't know how encouraging this is.
Barbara Lasser, a psychologist who lives and works in Huntington Beach, had breast cancer diagnosed Oct. 4, 1994.