Holding on to Normal

by Alana Somerville

  How would people react to my bald head, especially my immediate family? Greg had always said he thought I was good-looking. What would he think of me with my hair entirely gone? What would my daughter think, especially since she was such a girlie girl? And Rudy—at nine months old, how would he react to the change in my appearance? I put on one of my new Believe hats.

  “You look good,” my mother said.

  “Thanks.” She never failed to try to make me feel good.

  “I can’t believe how much colder my head is with no hair at all.” I hesitated, and then went on. “Luckily, my eyebrows and eyelashes are intact—small miracles!” I grinned when I felt like doing anything but. I felt like a badly plucked chicken.

  “You’re lucky I used to lay you on your tummy when you were a baby. That’s why your head is so perfectly round. You should thank me!” We both laughed out loud, but she was right. My head was round. Round and almost bald.

  Although my head had been shaved, wisps of hair where it hadn’t fallen out at the roots were popping up in patches on my head here and there. But by day twenty-one they too fell out.

  “It’s only hair,” people told me. “You look great.” Others said, “It’ll grow back before you know it.” I knew they meant well, were trying to make me feel better, but it didn’t help. As a woman, I felt that I was defined by my hair to a great extent—making sure it looked good, brushing it, playing with it, putting it up, curling or straightening it, cutting it, coloring it. I often laughed about the bottles of hair spray I went through as a teenager trying to get my hair “just right.” It was so hard first to imagine life without hair, then to have to live that reality.

  I began to wear that Believe hat constantly during the day. The only time I took it off was to shower. I even began sleeping with it all the time. I didn’t expose my head to anyone, even the people I was closest to—my mother, my husband, my children! I just couldn’t.

  The only person who asked to see my head without a hat was Charley—Greg didn’t, neither did my mother. Greg acted as though my having no hair didn’t bother him in the least. He didn’t treat me any differently because of it, which I was grateful for. But the fact that they didn’t want to see it—to see me as I was—tormented me. I knew they were doing it out of love, but I wanted to feel safe revealing myself at my weakest. It would mean I could at last let go, let them take care of me in all my vulnerability.

  Only Charley asked. “Okay,” I said. “It’s your special treat—yours and Rudy’s—to see my head, okay?” She looked so surprised. I took my hat off. I felt exposed.

  She felt my head. “I love the way it feels.”

  “I’m so happy you do.” I expected her to be scared, and she reacted better than I could have imagined. To her, I was still Mommy. Nothing had changed.

  “Thanks, Mommy,” she said, pulling her hand away and smiling her beautiful smile.

  “I hope my hair will start to grow back by your birthday in March.”

  “Really?” She reached up and unclipped a flower barrette from her hair. “Here, Mommy, you can wear this next summer.”

  I almost started crying. “Charley! How lucky am I? That’s just what I’ll do!”

  As for Rudy, I swear he did a double take when he saw me the first time with no hair. Then he wriggled off to wreak havoc as usual, unfazed by my appearance. I don’t know why I’d been so worried he’d get upset, too.

  “He has so much energy!” I said to Erin one night. “He’s so quick, if there were an Olympics for crawling, he’d win gold.”

  “They never stop, do they?”

  “He’s getting into everything. He chases me around all the time. When I open the fridge, he tries to crawl into it—one day he got right into it and grabbed a beer. When I open the dishwasher, he goes for it, and when I open the door to go out, there he is.”

  “Are you getting enough rest?”

  “I’m okay.” I actually was so tired, but I was trying to keep everything as “normal” as possible for everyone, especially the kids. I was starting to sleep better using Ativan, but it wasn’t helping as much as I’d hoped. I’d had that prescription of Ativan since my first night of chemo when I’d started throwing up and had to go to the hospital. “I try to tire Charley and Rudy out during the day so that early in the afternoon we can all get a nap, but usually they end up sleeping while I lie there trying to fall asleep. And just as I start dropping off, they invariably wake up.”

  “That always happens! You can’t sleep when they do.”

  “If I weren’t so busy with them, though, I don’t know what I’d do.” But I did. I’d end up wallowing in self-pity, because always in the back of my mind was the thought that just as I started to feel better, there would be another treatment and I’d feel like crap again.

  The wig shop called: My wig was ready. I should have been excited, but I wasn’t. I was depressed and I felt crappy because of the chemo. Carlo had done an amazing job styling it, though. He helped me to get it in the right spot. Then he placed it on a frame so it would keep its shape and put it in a box. When I got home, I put the box straight in my closet.

  I splurged and bought myself a gorgeous soft toque. I’d been wearing the Believe hat around the house, but it wasn’t as soft on my head as I’d hoped. I figured I could wear this new one for months, but I shouldn’t have bothered because the next day, I received a package in the mail. It was a gift from my aunt Audrey, who lived a couple of hours away in Toronto. I called her right away.

  “You made all of these?” I asked. She’d sent almost fifteen hats in a rainbow of colors.

  “Every one. There are ten for you and extras for Greg and the kids, too.”

  Then more hats came flooding in from family and friends: handmade toques, thicker ready-made ones—even one that looked like the original sock monkey. I’d be set for the worst of winter, and the timing of my chemo treatments couldn’t have been more perfect—it would be easy getting away with wearing a hat all the time, even indoors.

  As I stroked one of Aunt Audrey’s cozy toques and admired how incredibly soft it was, though, I couldn’t help but wonder how long I’d have to go through the hell of living without my hair.

  Chapter 18

  A NUMBERS GAME

  I never realized it until this all happened, but it turns out I am a numbers girl. “Right now I’m 25 percent of the way through chemo, and tomorrow I’ll be 37.5 percent through, or 38 percent if you like to round up.”

  Nina laughed. She was driving me to chemotherapy, and all I could talk about were the percentages I had accomplished.

  “I do like to round up—it sounds better,” I added. “Thanks again for the Boobie Brigade T-shirt.” We were both wearing them and planned on rocking the chemo suite.

  “They’re fun, aren’t they?”

  “I love them! And I appreciate you coming with me,” I said. “When I put all the treatment dates in my calendar, I knew I’d have to get help. Greg wouldn’t be able to take all that time off work, and someone had to take care of the kids, too. And when I sent out an e-mail asking for people to drive me to chemotherapy treatments, I didn’t know I’d get the kind of response I did.”

  “What do you mean?”

  “I’m a hot ticket! Within an hour, all of the spots were filled. I even had to turn people down—I wanted to make sure Erin and other family members would have the chance to come. I think it will make a difference having people experience it firsthand. But you know that already.”

  Nina nodded. She’d taken her uncle to JCC for cancer treatment, but sadly he’d passed away. I hoped going back wouldn’t be too difficult for her.

  “I am glad I can do this for you, Alana,” she said.

  Nina was such a good friend. Reactions to my diagnosis varied. Some of my friends were scared and backed away, while others—like Nina—dove right in to support me any way they could. I was initially offended that some people couldn’t handle it. I couldn’t help but think, If they can’t handle
it, how on earth will I? But then I realized that everyone was sensitive to different things, and that they all handled their fear—which is essentially what it was—in different ways, and that I had to be accepting of that. I admired Nina’s determination despite the circumstances.

  I pushed my seat back, trying to relax. Heading to chemo always made me feel antsy. “It’s hard to believe that by the New Year, I’ll be 50 percent done. And hopefully onto the less nauseating medicine.”

  “The next one won’t be as bad?”

  “Not that way, apparently, but it does come with a whole other whack of side effects.”

  “Of course,” Nina said wryly.

  “Wouldn’t be chemotherapy without side effects! I’d totally understand why someone would want to play hooky on chemo. I feel great right now—like I could run a marathon—but I know that soon I’ll feel like an absolute bag of garbage for more than a week. It’s hard to go for that reason. You might have to drag me into JCC kicking and screaming,” I joked.

  “It’s terrible that you have to do something so awful, but knowing it’s helping makes a difference, doesn’t it?”

  “Yeah. It’s like childbirth that way. It hurts so badly, but you know something good is coming of it.”

  In the blood lab, I was thrilled to find out that my numbers had improved since the last time, except for my white blood counts. They were a little low but within what was considered a normal range.

  “That’s great news,” I said to Nina as we headed to the chemo suite. I took a number once we got there, and showed it to her, explaining the system. “I think my great blood work is mostly due to Dr. Julia.”

  “Who’s that?” she asked, just as my number was called.

  “A chiropractor in Niagara Falls.” We walked over to my assigned lounge chair, and I got comfortable. “A friend of mine told me Dr. Julia knows a lot about nutrition, and I wanted to talk to someone about what I was putting in my body, what chemotherapy was doing to me, and how I could improve how I was feeling.”

  “Makes sense.”

  “You know me, Nina, if you’d asked me before my diagnosis, I would have said I was fairly healthy. We’ve always eaten lots of fruits and vegetables, skim milk, fish and lean meat, and we drink plenty of water.”

  “People even laughed about you making your own laundry soap.”

  “True! That takes a bit of effort, but honestly, it works well!” It occurred to me how ironic it was that Nina and I were talking about why I made my own soap to avoid toxic chemicals as a nurse inserted an IV needle into me so I could be injected full of toxic chemicals.

  “So what did this Dr. Julia have to say?” Nina asked.

  “A lot.” I’d left her office with a truckload of information. “Her main recommendation was that I eat a plant-based diet and stay away from coffee and alcohol. But I get to drink fruit smoothies every day, too!”

  “So that’s why you’ve gone vegan? I knew you had, I just didn’t know all the details.”

  “I’m doing everything I can to beat this.” The nurse finished checking my vitals and left, and I shifted in the lounge chair so I could look at Nina more easily. “But it’s a big change,” I said. “The Dinner Club is in full swing, and I’m finding it incredibly difficult. All that delicious and rich comfort food shows up, and everybody sits there eating it like royalty, while I chomp away on unprocessed greens.”

  Nina couldn’t help but laugh.

  “But you won’t believe what’s happening. Some people have started bringing two dishes on their nights: a regular meal for the family and a vegan meal for me. Everyone has been more amazing than I ever could have imagined.” Gabby was stuffing me with food, and so was Adriana. I honestly don’t know how she did it. She worked until three P.M. as an educational assistant at the school where I taught, yet came over to our house once a week to bring us food. Then on top of all that, she went to work at a group home where she took care of disabled adults.

  I swallowed and couldn’t talk for a minute. “I have such incredible friends,” I said to Nina.

  She touched my hand with the IV, then pulled back all of a sudden.

  “Don’t worry, they tape it up pretty good,” I said. “See?” I waved my hand around and showed her the IV site. “Still intact! I can’t help but feel there’s a real connection between what I’m eating and how I feel. I went to a bridal shower last weekend and gorged on cheese, meat, sweets—everything. The rest of the evening I felt so uncomfortable. My body seems to be talking to me, even yelling at me sometimes, to give it good food. And now that I am, my blood work is reflecting that!”

  We high-fived each other.

  “I’ve even decided to try to convert Greg, but he’s going to be a hard sell,” I said. He was a true carnivore. I wasn’t sure he would ever go for it.

  The nurse came and checked my vitals again. Everything was great—no nausea, no reactions. Nina was doing okay, too. After the nurse left, she said, “I have a treat for you.” She reached down into her bag, pulled out her camera, flicked it on and handed it to me.

  I glanced at the screen. “This is amazing, Nina!” She had videotaped the entire hair-shaving party.

  “There’s more: I got everyone at the school together and recorded messages well before the party.”

  I couldn’t believe it. It was now the middle of December. Among the messages were ones from Melanie, Brody, and other staff and students. I laughed at some; at others my eyes started to well up.

  I replayed a message from our librarian, Lorraine. She may have been the kindest woman I’d ever worked with. The kids loved her and so did the staff.

  I looked at Nina. She seemed distressed. “What’s the matter?”

  “About a month after Lorraine taped that message, she was diagnosed with a brain tumor. It’s cancer, and they aren’t giving her much time.”

  I closed my eyes. All the feelings I’d had when I was diagnosed resurfaced. “I can’t believe it.” I didn’t know what else to say. Lorraine had been at my party and didn’t know at that moment she, too, had cancer. How many other people were walking around with cancer growing inside of them? What was happening when so many people were being diagnosed with this horrible disease? Was it something we were being exposed to? Something we had done? Was I crazy for changing my diet? For making my own laundry soap? Was getting cancer something that was bound to happen from early on because of our genetic makeup?

  I was about to find out.

  Chapter 19

  THE GREAT UNKNOWN

  We were all anxious about the results of the genetic testing. But it was Charley I was most concerned for. I couldn’t have cared less what the results were for myself—I already had cancer, so testing positive wouldn’t change that. But for Charley, the results were crucial.

  “What’s bugging you?” Nina asked as we waited in the genetic counselor’s office. I was anxiously tapping my fingers on the arm of the chair.

  “There’s so much at stake. This could change things a lot for my kids and my family.” I wasn’t sure what else to say to help her understand.

  “Try not to worry about it until you hear what the counselor has to say.”

  That was the same kind of thing my mother would say. She and Nina were both right and were both trying to be kind, but it was easier said than done. While I was glad Nina was with me, I wished I’d changed my plans and brought my mother or Erin instead. It’s not that I didn’t want Nina there, but this was such an important appointment. I shook off any misapprehensions. It was Nina’s turn to come with me, and she was the one who’d support me whatever happened. And I was okay sharing everything I found out at any of my appointments with anyone and everyone. I told myself that this would be no different. But we waited for almost ten minutes, and that whole time I couldn’t stop shifting in my seat. What would the results be? The door opened and the counselor came in. She was the same one I’d seen the last time.

  “Hi, ladies.”

  “Hi,” I said, twisti
ng my fingers together in an attempt to keep still.

  She sat down at the desk, glanced at the papers she had in her hand, and then looked at me. “I’m not surprised by the results based on your family history. Although there was some sort of background with your grandmother’s sister, in cases where someone is BRCA1 or BRCA2 positive, there’s usually a more significant family history of breast cancer—at least three or four people on at least one side of the family tree. For you, the lack of family history was on your side. The test was negative.”

  Big sigh. Deep breath. Enormous smile.

  “Again, based on your lack of family history, I believed it wouldn’t be positive, but I’m glad to confirm it. Since you don’t have the gene, the risk of developing a new primary breast cancer in the other breast is lowered,” she said, pausing and looking at me to make certain I was paying attention. “But it isn’t zero. As of right now, the chance is 0.5 to 1 percent per year.”

  She wasn’t telling me anything I didn’t already know. When sitting around waiting for results and surgeries, I did a lot of research.

  “There are a couple of stipulations,” the counselor continued. “First of all, the test results are only 95 percent accurate. The other issue is that although you tested negative for the BRCA1 and BRCA2 mutations, it’s possible there may be other mutations you could have, ones that scientists simply haven’t put a name to yet.”

  I didn’t want to think about even more risks, but it seemed I had to.

  “In other words, you could be a carrier for BRCA3 or BRCA4 or some further mutation that hasn’t yet been identified.”

  “But as far as you can say right now, my situation is just attributable to bad luck?”

  The counselor nodded. That was as far as she would go.

  I had no definitive answer as to how I’d ended up with cancer. No way of knowing if I could have done something to prevent it. I would always have questions. I knew my frustration was obvious from the counselor’s reaction.