My bandages stayed on for the first few days; then I removed them. I wasn’t that sore anymore and the doctor had said it would be all right. Plus, having the bandages off made things much easier—I didn’t need to be so careful keeping them dry when I was showering. I left the surgical tape on the incisions for a couple of weeks, and after that it peeled off without any problems.
My relationship with my body changed. When I used to get out of the shower, the first thing I would do was slather myself with lotion. I still used lotion, but as I stood in front of the mirror, I realized that I’d been skipping the breast area entirely, even before the surgery. I didn’t even refer to them as “my breasts” anymore.
My breasts. They were nice, once. My bra size was 32C. My breasts weren’t big enough to look like they didn’t fit my body type, but I was far from flat-chested. I didn’t wear cleavage-showing tops (I was a bit conservative that way). But on more than one occasion I noticed men looking at them. I wasn’t offended. I was flattered, to be honest. I felt sexy. I felt strong. They made me feel like I was a woman. I did not want cancer to rip from my body the two things that made me feel very much like a woman: my breasts and my long hair.
When I first found the lump, I felt it at least twenty times a day, wishing each time that it wouldn’t be there anymore, each time not believing that it was there. After I was officially diagnosed, I was afraid of it. Afraid if I touched it, that would make it spread; afraid that the next time I touched it, it would be bigger. After the surgery, not only the lump was gone, but part of my breast was gone, too. When I finally had the nerve to look, there was a dent. It was as if a golf-ball-sized piece had been taken out, and the remaining parts sewed back together without filling the void first. Nothing was in its proper place anymore, and it simply looked deformed. If a mastectomy was in my future, my entire breast would no longer be a part of the body I cherished and loved, would no longer define my womanhood.
Chapter 9
BAD NEWS
I had to wait three anxious weeks after the lumpectomy surgery to meet with my surgeon, Doctor 6, to get the results of the pathology tests.
“The good news is that the margins of the tumor were clear, meaning that when I removed the lump, I got all of it,” she explained.
“That’s great!” I said. For a fleeting moment I felt like things were going my way, but I realized she had more to say.
“The bad news is that one of the four lymph nodes I removed has tested positive for cancer. A small section contained cancer cells—a very small section, 2.2 millimeters—but they were there nonetheless.”
I started to feel familiar waves of panic. Doctor 6 kept talking, and I struggled to pay attention. I knew I wasn’t the only one. Greg was there with me, struggling, too. Doctor 6 had to be struggling as well. She lived so close to me. We knew some of the same people. She was young. She empathized—I could see that. I empathized with her—how horrible it must be to pass on such bad news.
“When deciding what stage a woman’s cancer is at, a few things come into play,” she said. “The size of the tumor, if any lymph nodes are positive, as well as the grade of the tumor, which indicates how fast and aggressively the cancer cells are growing. The grade of a tumor is numbered one, two or three, with one being the least aggressive and three being the most aggressive.” She paused. “Your tumor is grade three.”
I stared at her, speechless. Greg squeezed my hand. Normally that would make me feel good. Loved. But in the face of such devastating news, I was numb. What could anyone do that was going to comfort me or help me?
“Your cancer is categorized as Stage 2B and also triple negative, which means your particular cancer cells are not receptive to estrogen, progesterone or HER2/neu.”
Was it my imagination or had her voice wavered? How on earth could anything be worse than what she’d already told me?
“What does that mean?” I managed to ask.
“Many women with triple negative breast cancer will go on to test positive for the BRCA1 or BRCA2 mutation,” she said, explaining that if I tested positive, that could result in an increased risk of breast cancer for members of my family—Charley, my mother, my sister, my nieces. The men in my life weren’t immune, either. The risk to them was much lower, but it was there. I thought of my children. That embarrassment I’d been feeling turned into shame and guilt. It would be my fault if my daughter got breast cancer one day. It would be my fault if my son were one of those men affected. I was mortified.
Doctor 6’s words drifted into my consciousness, plus other words that I associated with cancer. Chemotherapy. Mastectomy. Radiation. Referrals to other doctors. I tried to focus. The oncologist had to decide, she said, but once the lymph nodes were involved, chemotherapy was usually part of the treatment, and perhaps radiation, in order to kill the cancer cells. I think she said I’d have to meet with both an oncologist and a radiologist to find out for sure. I slumped in my chair. Charley and Rudy. I’d never imagined that stupid lump would have anything to do with them. This wasn’t just my disease anymore. Doctor 6’s words bounced around in my head till they became all confused. It was too much to handle.
Back home, I tried to keep busy. I wrote another e-mail—after all, I’d committed to letting people know how things were going. And I wanted everyone to think I was fine, that I was holding my shit together. But I was discovering just how deceptive appearances could be.
Hello, everyone,
I apologize for the informality of an e-mail, but this seemed to be the best way to get information out to everyone about the pathology results and prognosis.
First things first: The tumor is out! She got it all! One of the four lymph nodes removed contained a very small cancerous growth, but since the others were clear, it’s unlikely there’s any more cancer. My other scans were okay, so, in essence, I’m cancer-free at the moment!
Now I’m waiting for an appointment with an oncologist. I’ll probably end up having to have a bunch of chemo appointments. That means I’ll be inviting anyone who wants to keep me company for the day to call in sick to work—maybe we could even squeeze in some shopping!
Very likely I’ll be bald in time for Christmas and Santa, but if I’m a good girl, perhaps he’ll bring me something to keep my head warm!!!
Thanks to everyone for the cards, phone calls, cookies and dinner plans. We appreciate everything and are going to kick this thing in the butt!
I cried as I typed that e-mail. I was scared. I didn’t want to be going through this. I didn’t want to lose my hair. I didn’t want to die. It wasn’t fair, and I was angry. I cried afterwards, when I was alone. I paced up and down; I punched the wall. I was crumbling inside, but I didn’t want anyone, especially my parents or my children, to know how truly frightened I was. They were afraid themselves, and if they knew how I felt, it would be so difficult for them. This is my fault, I thought.
Part Two
FIRST STEPS
Chapter 10
ONCOLOGY LOGIC
Lucky. I wasn’t exactly feeling like I was leading a charmed existence, but genetic testing is expensive, and I qualified to have it done at no charge, since I was under thirty-five years of age when I was diagnosed. And I’d get the results relatively soon—in approximately eight weeks.
I decided to take two of the most important women in my life, my mother and my sister, to my appointment with the genetics counselor. If the results were positive, it would affect them first. I tried to explain the implications to Erin.
“If the test comes back positive, that could mean that you and Natalie are at risk.” Natalie, Erin’s daughter, was only six.
“I’m not sure I’d want to know,” she said. “Or if I’d want to know about Natalie, either. How would that change our lives? How we do things? How we think of the future?”
I thought about what she said. She had a point. I didn’t know what the next step would be for me or if I’d want to know about my own kids. Would we live in fear? Would changing anyt
hing we did affect the inevitable? They were all questions I didn’t have answers to.
When we met, the genetics counselor showed me how information I’d sent in about my family history of cancer had been mapped onto a family tree. Instances of cancer were highlighted, but in my case there weren’t many. In fact, only one relative on my mother’s side of the family had cancer, and none on my father’s side. Because of that lack of family history, the counselor said she thought there was only a 5 percent chance of testing positive as a carrier for the BRCA1 or BRCA2 gene. “Regardless, we’ll go ahead with the test,” she said.
I realized I would be well into chemotherapy before I’d find out the results. Before I left JCC that day, I had to have more blood drawn. I was rapidly becoming oblivious to all the poking and prodding that was being done to my body. Although needles pinched on occasion, of course, I simply endured them, watching as if what was going on was happening to someone else. I couldn’t help but stare, however, as the vial filled up with my blood. It seemed as though my entire future rested on that small tube.
On Friday, November 12, Greg and I went to meet with my oncologist, Doctor 7. I felt more prepared for this appointment than any other I’d had, since I already knew I’d likely need chemotherapy. I also had a list of questions in hand, thanks to a wonderful program called CAREpath that I’d enrolled in through my long-term disability benefits. I wasn’t yet receiving disability benefits, as I was on maternity leave, but would be when that ended in February on Rudy’s first birthday.
The program was optional, but I’d already figured out that second (and third) opinions were never a bad thing, and it meant I could talk to an oncology nurse over the phone about any or all of my treatment options. Shortly after calling for the first time, I was hooked up with a nurse named Margo. She was incredibly knowledgeable and compassionate, which was absolutely what I needed, and talking to her made me feel more comfortable about everything that was happening to me. She also e-mailed me that list of questions. They were great, because I never knew what to expect or ask, and the questions were ones I would never have even thought of myself.
The other great thing about Margo was that I felt like I didn’t have to be strong with her. I could let my guard down and expose my fears and frustrations. I didn’t want to cry in front of anyone else, for fear that it would show me as being weak, but I cried to Margo on the phone. She wasn’t a rookie. She understood.
I soon learned that oncology visits are all about routine. When we arrived at the oncologist’s office, we met with a nurse, who checked my weight. As I stood on the scale, I thought about a woman we’d seen in the waiting room, who was clearly going through chemotherapy, had obviously lost a great deal of weight, and looked extremely weak. Right then I made a decision that I wouldn’t allow myself to lose any weight during the course of my treatments.
“How much do I weigh?” I asked. I was wearing boots, and even made a point of having the nurse document that in my chart, so that when they compared my weight from one week to the next, the numbers wouldn’t be skewed.
Afterwards, a second nurse gave us a detailed overview of what the doctor would say. Greg and I thought that was odd at first, but realized that the practice of meeting with the nurse, then the doctor, ensured nothing would be missed. It also saved time: the nurse could present the doctor with the rundown of the situation as well as any questions we had before we even came face-to-face. Each visit would be the same: weigh-in, questions with a nurse, then the visit with the doctor. The nurse then began running through my chemotherapy schedule. “Drugs are normally administered six times, three weeks apart,” she said, “but because of your age and because we want to be aggressive with your treatment, you’ll receive what we call dose-dense chemotherapy—eight sessions, two weeks apart.”
Yes, let’s be aggressive! I thought.
She said that my drug regimen would most likely be a combination called ACT—the first four treatments would be a blend of Adriamycin/doxorubicin and cyclophosphamide and that the last four would be Taxol—and began to list the potential side effects. There were a lot: the expected hair thinning and loss, a decrease in the count of red and white blood cells and platelets, decreased appetite, mouth sores, taste changes, muscle aches, bone pain, severe sunburn with sun exposure, changes in menstrual cycle, including possible early-onset menopause, bladder irritation, allergic reactions, numbness and/or tingling in fingers and toes, diarrhea, discolored urine, nail changes and nasal congestion, among others. But, she cautioned, “Everyone reacts differently. Not everyone experiences all the side effects. Some people don’t experience any of them.”
I crossed my fingers, hoping I was the latter. But I was worried. The side effects sounded daunting. There was so much to take in. And I thought I’d been so prepared for this appointment!
“If you ever have a fever,” the nurse said, “you need to go directly to the emergency room. That’s the most important thing to remember.”
Greg caught my eye. If she sounded serious before, now she really sounded serious.
“A fever means there’s an infection in your body that you can’t fight, and only intravenous antibiotics will be able to get rid of it.”
By the time Doctor 7 arrived, we felt inundated, and we still had a tour of the chemo suite to come. She was beautiful: long dark hair tied back in a ponytail, glowing skin, nicely dressed. She didn’t spend much time getting acquainted. She talked briefly about the chemo schedule, confirmed that I would be on the dose-dense ACT regimen the nurse had mentioned, as long as my white blood cell count stayed up and I stayed healthy, then asked if I had any questions.
“No questions,” I said. I think I was in denial.
“When would you like to start?”
“Today.” I shifted so I was literally sitting on the edge of my seat.
She smiled. “I can have you start on Tuesday.”
Tuesday, meaning the next Tuesday, meaning only four days away. I turned to Greg. The sooner it began, the sooner it would be finished. There was no turning back. Finishing was all I cared about.
Chapter 11
WELCOME TO CHEMO!
The pre-chemo waiting room was not at all what I expected. I had imagined a somber, dim room filled with silent, sad people. The opposite was true. It was like a party, with music playing, nurses laughing, volunteers handing out coffee and cookies, visitors knitting, the sun shining through big floor-to-ceiling windows, and so many people.
It was incredibly frustrating to grasp how many people were suffering through the same adversity. And although I was definitely one of the younger people in the room, I wasn’t the youngest. “What are we doing wrong?” I asked Greg as we hesitated in the doorway. “Why is this happening to all of us?” Of course he didn’t have answers, any more than I did.
A woman came up to us. “Hi, I’m Margaret, a volunteer for the Canadian Cancer Society,” she said warmly. She looked to be in her eighties. “You’re new—you get a quilt! Everyone gets one as a welcome gift. While people are waiting, they knit squares.” She waved at the baskets scattered here and there about the room, filled with balls of yarn and finished squares. “Then all of the squares are joined together in quilts.”
While I chose a quilt, Margaret tossed in what I discovered was one of her signature dirty jokes
“What did the egg say to the boiling water?”
I couldn’t begin to guess.
“ ‘Don’t expect me to get hard. I just got laid this morning.’ ” She laughed a wonderful laugh and everyone around us smiled.
This place, which had the potential to be incredibly depressing, was just the opposite. I was so relieved. I would be spending a lot of time here in the upcoming months.
Greg and I took a number and sat in the reception area, waiting to be called to discuss the following Tuesday’s treatment.
“It seems odd they call you by numbers instead of names, doesn’t it?”
“I know. I wonder why?”
&nbs
p; “I guess if you think about it, not everyone wants other people to know they have cancer. There’s a stigma attached to illness of any kind, but especially that.”
“Although if you didn’t have cancer, you definitely wouldn’t be called. We know why everybody’s here.”
“But not their names,” I pointed out.
“True.”
It was good to have a chance to relax. We had left the oncologist’s office feeling optimistic, if saturated with information. Everything had happened so fast that I’d already been given prescriptions for drugs I’d need to take in combination with my chemotherapy treatments. There were four: dexamethasone, an anti-inflammatory steroid used mainly to decrease allergic reactions but also to prevent nausea; Kytril, also to prevent nausea; Neulasta, a needle that would be injected into my stomach three days after treatments to boost white blood cells to prevent infection; and Zopiclone, a sleeping pill that Margo from CAREpath suggested I get to counteract the effects of the steroids I’d be on.
We were lucky everything was so close together—the oncologist’s office, the pharmacy and the chemo suite were all on the same floor of JCC and right around the corner from each other—so we’d gone by the pharmacy on the way to the chemo suite to drop off my prescriptions. “They’ll be ready by the time you’re back,” the pharmacist had kindly said.
I couldn’t imagine how tiring it would be to spend time driving from place to place all around the city. Greg was already spending huge amounts of time away from work, and so was my mother. I thought about her. She was home with the kids. I knew she felt helpless, that it was difficult for her not to be with me, to be sitting at home instead, waiting, wondering, worrying.
The kids weren’t worried. They were too young to know or understand what was going on, and in many ways, because of that, they kept me looking forward, and kept everyone busy, which was a blessing. I’d been run off my feet with the usual chores the last four days trying to get everything organized—I had that list of side effects in mind—because who knew how I’d be feeling after this?
Holding on to Normal Page 5
