“You do have the option of revisiting the results every couple of years. There is a chance that someone could discover a new genetic mutation. It’s not to say that you don’t have one, it just might not be discovered yet. We could retest your blood to see if there have been any new breakthroughs,” she said patiently. “But it’s up to you.”
I thanked her, and we left. “The numbers are a lot lower, but not low enough for me,” I said to Nina as we made our way to the parking lot. “After twenty years, my risk of recurrence would still be about 20 percent. That’s too high. I don’t ever want to go through this again.”
“What will you do?”
“The doctors have decided I need chemo and one breast removed. I’ve decided that to totally remove the risk, I’m going to have both breasts removed.” I wasn’t sure if Nina was shocked or not, but in the same way that I felt empowered after shaving my head, I felt empowered by my decision. It was a no-brainer. I felt almost happy. But in terms of the genetic results, I was most happy for everyone else. My being negative meant my daughter, mother and sister—basically every female relative of mine—could breathe a sigh of relief. It didn’t mean that they would never get breast cancer, but it did mean that their risk of getting it was significantly lower.
There were concerns, though, raised by the possibility of future tests for unknown mutations. Charley wouldn’t be able to have genetic screening done until she was eighteen, and even if I did test positive for something, that didn’t necessarily mean she would. Would I cause myself years of unnecessary worry if I had further tests? Would a positive test make me feel that I’d found the answer to my particular cancer? I couldn’t stop thinking. My negative result only led to more and more unknowns.
Chapter 20
NESTING
Nesting is something women apparently do before they have a baby. Their subconscious triggers it, telling them to get ready, so a woman who’s nesting will typically do an incredible amount of housework, and that’s a sign labor is imminent. What probably happens is that the sheer intensity of all that housework precipitates labor. It’s a classic example of which comes first: the chicken or the egg?
I had never experienced nesting with Charley—she surprised us by arriving four weeks early—or with Rudy, because even though he came eleven days late, I felt so much like a beached whale that I wasn’t able to do much of anything. After the hell I went through after my first infusion of chemotherapy, things improved somewhat, and I usually started feeling better after about a week following each treatment. It occurred to me that I was slowly beginning a pattern of nesting behavior, although I didn’t realize it right away. I simply wanted to get as many of the normal day-to-day tasks done while I could.
The “nesting” would begin on day 10 or 11 after each chemo session. I’d start frantically catching up on everything—doing multiple loads of laundry, grocery shopping, clearing up the toy “maze” the kids had invariably built, vacuuming, organizing the massive number of books in Charley’s room, changing bedsheets, paying bills, and responding to e-mails I’d neglected. My mother was an immense help, but she couldn’t do everything—she had her own household to look after—and I was anxious to finish whatever I could while I’d have those few good days before the next infusion and round of nausea and vomiting, and I was out of commission.
“Are you sure I can’t go get the groceries?” Mom asked one day.
“If you don’t mind staying here to watch the kids, I’ll go. I’m starting to get a little stir-crazy.” I always went outdoors with the kids no matter how I was feeling, so they’d burn off some energy, but running errands would be different. I needed a break from the kids and some me time.
“No, you go!” she said, practically pushing me out the door once she heard that.
I knew she’d understand. My outing didn’t last long—I got tired of the awkwardness of being around people who stared at me. Regardless of where I went, I felt as though they looked at me with pity. That may all have been in my head. I wore a toque so no one would know I was bald, but I felt as though they could tell. The staring made me angry, but I kept it to myself. It’s just how people are, I thought. It did feel good to get out, though. I was determined that I would do it again.
I also got back into my evening routine of going for walks around the block as a de-stressor—something I’d started before I had cancer, once the kids were in bed, since I wasn’t much of a “sit on the couch and watch TV” person. It was the dead of winter, but I’d bundle up, crank up the volume on my iPod, and go around the block to get fresh air and clear my mind. I’d keep going until I was fatigued, sometimes for two hours if I was up to it. A few nights after I started this routine again, I got home and Greg was lying on the couch watching TV. “The exercise is so fantastic for my sleep,” I said, pulling off my scarf and shaking the snow from it.
“You look good.”
I glanced in the mirror. I did look good—my eyes were bright and my cheeks were all pink. Looking at me at that moment, nobody would have guessed I was ill, except for the lack of hair. “It’s great when I can get in a walk like this. Some nights, especially now that I’m getting closer to the next treatment, I don’t even need to take an Ativan or Zopiclone to have a good sleep.” It was a vast improvement. I often didn’t sleep well, particularly during the first part of the chemotherapy cycle.
“I know,” Greg joked.
I was sure my tossing and turning were keeping him up at night, but he didn’t say anything more. “I can’t help but think more and more about percentages,” I said, collapsing onto the couch beside him and recalling the conversation I’d had with Nina.
“What do you mean?”
“I’ll be 50 percent done with chemo. As long as I know that with each treatment I’m getting closer and closer to the end, everything seems bearable. Even the nausea.”
“Really?” I could hear the skepticism in his voice. He’d been there for everything and knew what I’d gone through.
“Really. I can’t believe I’m almost halfway through. I feel like I can make it now.” With that, lying safe beside him, I promptly fell asleep.
Melanie took me to my next round of chemo. Since it was my fourth and last AC treatment, to celebrate she brought a picnic basket packed with gourmet goodies: smoked salmon, gourmet crackers, Ezekiel Bread, and homemade hummus, spinach and roasted eggplant dips, and salsa, as well as figs and sweets. In addition to being handy with hair clippers, she was also an amazing cook.
“Everyone’s looking at us,” she whispered to me in the waiting room.
“It’s your basket,” I said. “They’re envious.” We offered everyone some but didn’t get any takers—people were too kind to dig into our bounty.
“They must be trying to cram more patients into the suite than usual,” I said as our wait dragged out. “The chemo suite is closed part of the week for the Christmas holidays.” But the time provided us with the perfect opportunity to enjoy Melanie’s feast. I looked around the waiting room as we ate. There were a couple of new patients. I knew they were rookies—I recognized them by their quilts. I remembered how I’d felt when I’d first begun this journey and felt terrible knowing what they were heading into. It was hard to believe I wasn’t a newbie anymore, but I was glad I’d come this far.
“Good riddance to AC,” I said, and Melanie and I toasted each other with our bottles of water.
The holidays were usually crazy, spent running around town from house to house, visiting relatives, and eating turkey dinner after turkey dinner. I loved that, but this year, Christmas was different from every other.
“I don’t want to miss any chemo treatments,” I said to Greg. “And you know what it’s like during the holidays—the first thing everyone wants to do is hug and kiss everyone else, and people always seem to get sick. I don’t want to get sick and I don’t want the kids to, either.” I had visions of one of us ending up with a fever and having to run to the emergency department. Not my idea of fun
over Christmas.
We decided the best way to stay healthy was to avoid as many people as we could, so we stayed home as much as possible. Charley didn’t realize anything had changed—she was too young, and so was Rudy. Christmas Eve, I made dinner, and after that, we took the kids for a ride to see the light show at Niagara Falls. It was always such a spectacular event, and with all that had been going on, none of us had had a chance to go. The kids both fell asleep in the car on the way back. “The excitement was a little too much,” I said to Greg with a grin. When we got home, we woke Charley up so she could leave out cookies for Santa, then tucked her and Rudy into bed.
Christmas morning, Charley woke us up. “I want to see if Santa ate the cookies, Mommy,” was the first thing she said before running out. We got up and followed, after getting Rudy from his room.
“Mommy, he left half a cookie for me,” Charley shouted.
I had to smile at Greg. “She hasn’t even noticed the presents under the tree, she’s so excited about Santa!” There was a knock at the door.
“Mom, Dad!” Their arms were full of presents. Her mouth covered with crumbs, Charley ran over to hug them while they were standing in the doorway. “Charley, let them in.”
“Presents!”
“You’ll have to wait to open those. Breakfast first.”
I steered everyone to the dining room, and Mom helped me in the kitchen while Greg and Dad kept the kids busy.
“You okay with all this, Alana?”
“I’m fine, Mom.” And I was. After that first disastrous visit and a little coaching, my dad had become more upbeat, at least in front of me. I was happy to have him and my mother over for a small celebration. “Mom, can you take these out?” I handed her the Baileys coffees I’d made, then followed with a fruit tray and croissants. Charley started squirming before we’d even begun eating, and I gave in.
“Go downstairs and wait by the tree, Charley, we’ll be there in a minute. But don’t open anything yet!”
She pushed back her chair and ran out, and Rudy tried toddling after her.
“I may have spoiled the kids a little more with presents this year,” I said to my mother. “Probably because I wanted to make up for some of the chaos they’ve had to go through.” I couldn’t help but think after I’d said that, I wonder how many more Christmases I have left?
“You have every right to do that. I spoiled them a bit more this year, too.”
“I don’t want them to feel different, Mom. I just don’t want them to be affected by this.”
“Alana, you and the kids are all going to be stronger because of this. I know it,” she said as she picked up the fruit tray and carried it down. The rest of us followed with our unfinished coffees, and the kids began tearing into the presents.
“Charley’s getting to the age where she is starting to get it, isn’t she?” I said to Greg. “It’s exciting to see.”
“Rudy’s still happy playing with wrapping paper and empty boxes.”
“It’s true!” They had a blast and so did we. After all the presents had been opened and my mother had helped me clean up the kitchen and some of the wrapping paper—“Let’s leave some out for Rudy,” I said—my parents were off.
“We don’t want to miss the Christmas morning fun at Erin’s,” Mom said.
I knew the subtext was that they didn’t want to tire me out.
After lunch and a nap for the kids, Greg’s mother came over to spend the rest of the day with us. His father had passed away a couple of years earlier in an accident, and I missed him. He’d been the best father-in-law anyone could ask for, and I wished he could have been around. Christmas was a tough time for all of us without him, but especially for Greg’s mother, and we were happy to have her over. But she’d changed after Greg’s father passed away, becoming more distant, especially since I’d been diagnosed. She didn’t want to talk about my cancer or treatments, and whenever she was around, it was as if there were a big elephant in the room. I imagined that if Greg’s father had been there, everything would have been much more open. He would even have joked around with me. That was his way—relaxed and funny. Greg and I didn’t talk about that, though. He’d been so affected by his father’s death—probably more than even I knew—and I wasn’t sure I wanted to go there.
On Boxing Day we ventured out to my parents’. Normally they’d have a houseful of people, but my mother had promised, “It will only be a small gathering,” and it was. We had an intimate dinner for six.
“This is so relaxing, Mom. I hope you don’t mind that it’s smaller,” I said.
“Not at all. This is actually quite nice!”
I looked around the table. Charley was happily stuffing her face with turkey, and Greg was heaping his plate with a second helping of stuffing. Rudy’s face was covered with bits of mashed potato. It was perfect. Despite our sticking close to home, Christmas had proven to have been fantastic—different, for sure, but wonderful. In fact, probably the best Christmas ever, and Greg was happy with how low-key it was as well.
I finished off another spoonful of potatoes. “I think I’m starting to know how you feel on a daily basis,” I said to Greg.
“What do you mean?”
“I feel queasy, but as long as I have food in my stomach that seems to help, so I’m trying to keep eating all the time.”
He laughed.
“It’s true! I’m positive I’ve never eaten so much in my life!” I couldn’t possibly eat more, nor could anyone else—even Greg. Mom and I started to clear the table, and I said, “I feel great. I even managed to stick to my diet by eating all the vegetables.”
She smiled, but waited for me to continue as we went into the kitchen—I think she knew I had something on my mind. “The Taxol part of chemo starts soon, and I don’t know if the diet will work as well with it.”
“But the nausea will be gone, right?” she asked.
“Right,” I said, knowing I didn’t sound very confident. I’d talked to women at JCC and discovered that while some found Taxol more bearable than AC, others found it less.
“Don’t worry about something you don’t know about yet,” Mom said.
It was a refrain I would have to learn to live by, I told myself. I had no idea how I would be affected. Nobody did.
Chapter 21
MOVING, MOVING, MOVING . . . ON
I was anxious and leery about the amount of drugs I needed to take before my first Taxol session. I’d already been taking two dexamethasones per day for the first three days after each of my earlier chemo sessions to help with nausea, but for this second half of chemotherapy, I had to take ten (ten!) before each appointment—five pills twelve hours before and another five pills six hours before, even if that meant waking up in the middle of the night—since the drug was a steroid and would help minimize the high risk of reactions.
“They make me edgy, and I can’t help but feel I’m going to be outside running laps around the block in the middle of the night instead of sleeping,” I said to Erin when she called one afternoon. “Even days after I took that cycle of two pills, I had a hard time getting a good night’s sleep because of the lingering effects.”
“Is there nothing you can do?”
“The only thing that works is my nightly walks. And I’ve cracked out a few old yoga videos I found in the basement.” During pregnancy and when the kids were infants, I’d found it hard to stay as active as I wanted, so I’d gotten exercise videos I could work out to without leaving the house. “I’ve been trying to do those close to bedtime, but I sometimes need to take an Ativan before bed to get to sleep, although I try not to rely on it that much.”
The first night I had to take the increased dose of dexamethasone, I ate a bowl of cereal at ten P.M.—I had to take the pills with juice or food—even though we’d had some of Adriana’s delicious food for dinner and I wasn’t hungry. Then I took the required five pills and got ready for bed. “I cannot wait to have all these drugs out of my system,” I said to G
reg irritably and crawled in beside him. I wanted to try to get any sleep I could before the pills took effect and left me lying wide awake, staring at the ceiling. The next thing I knew, I heard a buzzing noise.
“You slept!”
I turned over. “I know!” I was as surprised as Greg. It was already four A.M. I lay back for a moment, relishing the thought that I’d made it right through the night. “I already feel a bit edgy, though.” It was an odd sensation. “Not tired, which is great, but different from my usual self.” I felt fidgety and impatient. Like I wanted to leap out of bed to get moving—and keep moving. This wasn’t normal at all, and I was sure it was the dexamethasone.
“I’m going to get up and go on the computer. Don’t worry, I’ll try to not wake up the kids!”
“Okay,” Greg said. “Do what you need to do.” I got dressed and made my way to the kitchen. I swallowed the next five of the dexamethasone pills with some juice. I decided I was going to take advantage of the brief time to myself. I headed to the basement and did some online banking, checked out Facebook posts, then googled breast cancer statistics. I became so immersed in the numbers, I didn’t realize it was already six A.M. I quietly ran upstairs to shower. By the time I got out and made my way back out, my mother was up. She’d heard the kids moving about and was keeping them occupied.
“Hey, Mom!”
“Hi, honey.”
“I’m so glad you decided to come the night before my appointments.” I looked out the window. “You never know what the weather’s going to be like.” I got the kids settled at the kitchen table, made myself a smoothie, and was just starting to give Mom a rundown on who needed to do what during the day when I heard a knock at the door.
Charley ran and opened it before I could. “Uncle Doug!”
“Hey, your chauffeur for the day is here!” I could hear my brother-in-law call out.
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