I felt frustrated and trapped, but I knew there was no sense in questioning the doctor’s orders. I wasn’t upset about not getting to see palm trees or feel the California sunshine. No, I was mad that cancer was making me cancel my plans. This was bad, and it was only going to get worse.
“Fine,” I said, my frustration coming through in my voice. “Okay. What day then? When do I start?”
“She scheduled you for next Friday.”
“Friday? June fourth?”
“Yes.”
Is this a coincidence or some kind of bizarre joke? June fourth? I was starting my treatment on the anniversary of Aunt Sue’s death. This couldn’t get any eerier.
“Well, what about my hair? Will it fall out?”
Mom, who hadn’t moved from the doorway, answered, “Honey, it’s different for everyone. No two people are the same. But it can happen.”
“Mom, what about me? What is going to happen to me?”
Mom nodded. She couldn’t say it, so I did.
“It’s going to fall out. My hair is going to fall out. Isn’t it?”
Gently, she confirmed, “It probably will.”
In that moment, my world was crushed. It was too much. I grabbed a big handful of my long blond hair, pulling on it as I got up from the counter and crossed to the windows. The rush of emotions was physically painful. I stood there, shaking my head from side to side, but the realization that this disease was in control was more than I could shake off. For days, I’d tried with all my might to hold it together, but I couldn’t do it this time.
The cancer was real, it was happening to me, and for a minute, I was furious. I held on to my hair and thought, I can’t escape treatment, and now I won’t even be able to hide it. I wanted this to be private. Now it won’t be. I kept my back to Mom and the kitchen. My life will never be the same. Then, from somewhere deep inside me, I let out a bloodcurdling scream. It was a noise I’d never heard before. One that scared me.
Suddenly, Mom was grabbing onto me. “I’m right here,” she said. Her voice broke.
And I lost it in a way that I never knew possible. I clung to my mom, sobbing, “No, no, please. I will never be the same. Mom, help me.” I buried my head into her shoulder, my knees weak, my hands clenched as I wailed and repeatedly pounded my fist into her back. I’ll look like a cancer patient. I don’t want to be different. I don’t want this. Mom didn’t try to stop me. Instead, she allowed me to let it out. As my emotions took over, I collapsed onto her. I have cancer. It was one thing to hear that I had it, and another thing to really know it.
By the time Mom got me to the couch in the family room, I was not only worn out, but also appalled with myself for having scared her like that. I had no idea all those feelings and fears were even in me. With my anguish on full display, we sat side by side. Mom placed her hand on my leg. “You’re not doing this alone, Susan. I am right here.”
• • •
A few days later, we met with Dr. Weens’s assistant, Carole, for our tour and meeting to go over my treatment and what to expect in the upcoming months. I’d visited Dad at the cancer center before, so the tour wasn’t anything too new, although I was taking everything in from a new perspective. This time, I was the patient.
After being handed a new-patient welcome packet, I quickly flipped through the papers on all kinds of things, ranging from details about Hodgkin’s to free yoga classes. There was also an information sheet on each drug I would take and the possible corresponding side effects. Carole methodically reviewed each one. “Be aware that this might cause loss of appetite, itchy skin, numbness of fingers, diarrhea, vomiting, bone pain, constipation, rash, swelling, fatigue, memory loss.” And, for each drug we went over, she always ended with, “And this can cause hair loss.”
Sensing that I was getting discouraged, Carole added, “Susan, you won’t have all the side effects, but you might have some of them. Some people have more than others. You might have fewer.” Bottom line: it’s a calculated guess. Even the best doctors can’t know how someone will react to any medication until they try it out.
I continued to flip through the packet and landed on a yellow flyer advertising a ten percent discount at Bernadettes Hair Salon and Wig Studio. Carole noticed and said, “You might want to consider having a wig ready by your first treatment.”
There wasn’t much I could do about the potential itchy skin, mouth sores, or numbing of my fingertips. So many variables were being thrown at me, and I don’t like the unpredictable. So I grabbed onto the one thing I could do. I was going to get a wig.
As soon as we left, I handed Mom the flyer. “Will you call and see what this is all about?”
“Of course I will,” she said. We did not discuss my hair falling out, nor did Mom make a big deal out of it. She knew it was painful for me to think about, but she also knew I wanted to get this wig thing “right,” and she wasn’t going to let me do it alone.
• • •
Over the next few days, I launched us on a wild-goose chase, searching for the perfect wig. Our first stop was Bernadettes, the local salon from the flyer. Since Mom had explained when she made the appointment that I was twenty-two years old with long, straight blond hair, the wig specialist already had a few wigs in hand. She pulled flesh-colored panty hose over my head to squash my hair down, and as she stuffed my hair into this cap, she said pointedly, “You won’t have all this bulk when you wear your wig.”
Before we had entered the shop, I had told myself to pretend wig shopping was like trying on different shoes, but it didn’t feel like that. This wasn’t fun.
I stared into the mirror, frozen and apprehensive, as the woman stretched a wig over my head. I saw myself reflected with brown hair flipped up and straight bangs. I looked like Aunt Sue’s high school picture from 1966. The woman said, “Brown hair tends to look more natural, and having some bangs gives it a softer look too.”
I didn’t know if I wanted to cry, throw up, or laugh. I could see Mom’s face—she too was aching. I wished I could put my head in my hands and disappear. I ended the visit quickly, saying, “I’ll have to think about it.”
After that appointment, I made a decision. I liked my hair, but if I couldn’t keep it, I wanted someone else to enjoy it. It wasn’t going to do anybody any good once it had fallen out. Mom made the arrangements, and we went to our salon to have them cut my hair so I could donate it. I can’t say I wasn’t hesitant, but I felt like I did the right thing. I left with a cute, chin-length bob and my eight-inch ponytail in a ziplock bag, ready to be donated for a wig for a woman battling cancer.
A few days later, we drove an hour to a wig warehouse. The place was outrageous! From floor to ceiling, the walls were lined with hairpieces, wigs, ponytails, and hair extensions as far as the eye could see. If I was going to find a wig, it would be here.
The woman assisting us was rattling off advice. “Dark roots look most natural” and “Short hair is fun and sassy.” Then she said, “I have just the thing for you.”
The woman plopped a short, curly wig with brown roots and white, frosted tips onto my head. I burst out laughing. The stylist kept fluffing the wig with a pick, and I felt bad for laughing so hard, but I couldn’t help it. I looked exactly like Meg Ryan in Top Gun. The style was cute then, on her, in the mid-1980s. The timing of my uncontrollable giggling might not have been impeccable, but it felt good to laugh. Mom was waiting for my cue. Twisting around in the chair, I shrugged my shoulders. “It’s all right,” I said, pointing to my head. “It’s funny!”
Finally, Mom said, “She can’t decide today. We’re going to pass.”
Trying a new approach, I went online and found a man in downtown Atlanta who made customized human-hair wigs. Again, Mom said, “I’ll make the call.”
When we pulled up to an industrial park lined with brown cement buildings with no windows, I asked, “Mom, are you sure w
e’re in the right place?”
“This is the correct address,” she said, double-checking the paper where she had written it down.
With hardly any cars in the parking lot and no one around, the place seemed creepy. “Do you think we should go in?” I started to laugh. “Mom, we should just leave.” What have I gotten us into?
“I called to confirm this morning. He said he’d be here.” Mom was determined to see this through for me. We got out of the car and knocked on the thick metal door. After a minute, the door opened and a quirky little man greeted us. He seemed pleasant enough, but I wasn’t so sure about venturing into the dark, dungeon-like room behind him.
As we stepped inside, he slid the metal door closed behind us and switched the deadbolt, saying, “I like to keep the door locked. It can be a bad area.”
It soon became evident that he both worked and lived here. The room was an open-concept loft space, which could be kind of cool. But my eyes were fixated on the barbershop chair bolted to the floor in the middle of the kitchen. There were no windows and no lights on, except for one that beamed down on this barber chair. After examining my hair and running his fingers through it, he invited us to sit at his desk and proceeded to open binders filled with swatches of human hair. But where were the wigs?
“What kind of hair are you interested in?”
What? I thought. I don’t know. Hair! Blond hair. Something that looks like mine. I just want to try on a wig. Actually, never mind, I don’t need a wig. I want to know how we’re getting out of here.
I had no idea what to say. Luckily, Mom leaned forward and said, “We’re looking for a little something that would be close to my daughter’s hair right now. Can we try something on?”
Mom was doing her best, but every time the man glanced away, I poked her leg and whispered, “Let’s get out of here.” We were in the wrong place—this guy made stunning wigs for things like theatrical productions and parades. I don’t think young women with cancer were his specialty. These wigs started at $3,000, and they took months to make. Not to mention the fact that he wanted to shave my head right then and there on the spot.
We didn’t want to be rude after taking his time, so on our way out, Mom said, “You’ve given us a lot to consider. We’ll call back.”
After days of searching the internet from the comfort of our home office, a box from Revlon arrived in the mail. I opened the lid to find the platinum-blond bob I’d ordered inside. It was my color, the hair was straight, and I had opted for bangs, as recommended, but this little number looked like Julia Roberts’s hooker wig in Pretty Woman. It was sassy and snazzy all right, and I felt downright ridiculous in it. But I had a wig. I propped it up on a tall drinking glass on my dresser. Assignment completed.
Looking back, I had known before we ever started the wig hunt that we would never find just the right one. The one I wanted wasn’t one at all. I wanted a say. And I wanted the power to say, “No, no thank you” to each wig at each place. It turned out that what I needed was a plan. I couldn’t control my hair falling out, but I could control how I wanted to be seen. It would be bandannas and scarves covering my head as my hair fell out. I made a choice that was best for me.
Dear Sue,
Chemo and hair loss. I hated it for you, and twenty-seven years later, I hated it for Susan. But I tried not to let her do it alone. During your last hospital stay, the doctors gave you a multidrug cocktail—it was all they could do. Weeks later, the last time we ever spoke, do you remember what you told me? “Laur, I’m going to have to get a wig,” you said matter-of-factly.
With your thick, gorgeous, honey-brown hair, I didn’t want this to be the truth. So I tried to convince you otherwise. “You’ve got so much hair, I bet you’re not going to need one.”
When you insisted, “It’s falling out,” I told you I’d be there. I was crushed for you, sorrier than I could say. It meant that you were sick all over again. We never went shopping, because you didn’t live long enough to need a wig. Days later, when you were hospitalized, a nurse braided what was left of your hair so you’d look pretty when we said goodbye.
6
Two Susans, One Day
It was happening, whether I liked it or not. The first day of chemo arrived, and I didn’t need my alarm to wake up on time. I had never fully fallen asleep, tossing and turning in bed for hours.
What will it feel like? How sick will I get? How bad is it going to be?
When I heard Mom in the kitchen that morning, I called down the hall, “I’ll be ready to go soon.”
She’d already had an early morning, dropping Dad, Luke, and Carey off at the airport. Since I could no longer go on the trip to California, Mom got stuck staying here with me. She didn’t see it this way, but I did.
“Take your time,” Mom responded. “I’m going to make Italian sandwiches and pack the cooler with drinks and snacks.”
She didn’t say it, but I knew she was referring to our chemo cooler. How could I have forgotten? I might have thought it bizarre that she’d kept that thing, were it not for the fact that Dad still had to have follow-up chemo periodically. The cooler held two sandwiches and eight drinks perfectly, and she’d been using it for years to keep Dad comfortable at his chemo treatments. It was stashed in our attic alongside the beach umbrella and camping chairs, like it was totally normal. I smiled, feeling pretty sure our family was the only one with a designated chemo cooler—you’ve got to love our sense of humor. Mom was packing up as if we were going on a picnic, but we were headed off to a day of treatment, where I’d be hooked up to an IV that would administer various drugs for nearly eight hours. I was repeatedly told that chemo days would be long and that I might not feel well, so I pulled on comfy clothes. If I don’t look sick, I won’t be sick. If I look well, I will be well. That became my mantra as I got ready, carefully doing my hair and makeup.
From the kitchen, I heard Mom say, “Hon, you ready? Meet you at the car.”
On the silent ride to the hospital, I worried about Mom. On June 4, 1977, she left the hospital without her sister. Now, on June 4, 2004, she was heading to the hospital with her eldest daughter for treatment for the same disease. I thought about my little sister. Carey and I are six years apart. She’s the person I call, talk to, hang out with, laugh with. I cannot imagine how I would feel if anything happened to Carey. When I think about Mom carrying on without her sister, it’s tragic. The bond between sisters who also happen to become best friends is unmatchable. That bond between Mom and Aunt Sue ended because of some disease, and that’s hard to understand.
As I looked over at Mom, I thought, If she can be strong, I can too. I want to show Mom it won’t be that bad this time.
After we pulled into the hospital parking lot, Mom jumped out of the car, ready to go. She had her purse, a tote filled with snacks and magazines, and our special cooler hooked over one arm, and a fuzzy, leopard-print fleece blanket rolled up and stuffed under the other.
“Mom, can I take something?” I offered.
“No,” she responded, abruptly. “I’ve got it. This I can do.”
I let her be and followed one step behind as she marched toward the sliding glass doors. Mom had told me, “If I could do this for you, I would.” What she didn’t know was that I felt just as bad for her as she did for me.
Although my goal for the day was to do well for Mom, I couldn’t help but feel anxious. I felt healthy, so it was hard to consider that by the end of the day, I could be sick. I offered a quick prayer to the heavens: Aunt Sue, please be with Mom and me. We need you. All the angels and saints, please pray for us. And I’m pretty sure there was a Hail Mary mixed in there too.
I greeted everyone at the front counter, signed in, took a seat, and waited all of about five minutes before hearing, “Miss Stachler? We’re ready for you.” My heart was pounding.
Mom was familiar with the routine from being here with
Dad. It wasn’t totally new to me either, so in that way the awful familiarity was comforting and reassuring to both of us. Mom sought out the perfect station for the day while I headed over to weigh in. The first nurse had me step on the scale and then took my heart rate, blood pressure, and temperature before sending me off to the next nurse’s station to “tap my port”—the lingo for getting my IV in.
I went around a partition to a recliner and was greeted by a bubbly young nurse.
“Hi! I’m Courtney. I’ll be getting your IV set up.” She was so full of energy and exuded such an air of happiness that for a minute I forgot where I was.
She began by opening the bandage on the inside of my upper left arm, revealing the fresh one-inch incision from the surgery I had undergone two days earlier to get my port implanted. The cut was tender, puffy, and raw, and I began to worry about how much this was going to hurt. The skin hadn’t fused closed yet, and I kept imagining it splitting opening.
Courtney told me to raise my arm, rest it above my head on the back of the recliner, and keep it as still as possible while she gently jabbed what felt like a nail-size needle through my skin into the new, round, almost doorbell-like button underneath it. My port. Via this thing, the meds would travel through a soft, squishy tube into my arm, up around my shoulder, and down to my heart. From there, I was told the drugs would be dumped and dispersed throughout my body. The port would make it easier to draw blood and administer drugs, and it wouldn’t be as harsh on my veins. All I knew was that I was starting to feel like a science experiment.
I let out an audible sigh of relief after the needle had been inserted. I’d been holding my breath because I was more nervous about this part hurting than anything else. For that moment, I was pleased with myself. I took it as a small success, and those small successes were what I learned to rely on along the way. Courtney continued chatting with me as she secured the needle with a large, clear sticker and a white gauze armband.
“You’re all set,” she said with a smile.
The Cookie Cure Page 5