“Thanks so much,” I said. “That really wasn’t too bad. See you next time.”
I strolled past recliners occupied by patients and their family members. I stood tall, smiling, taking it all in. I realize now that I probably looked like a fool—so new, so naive, so unaware. I clearly had “rookie” plastered across my face, and I didn’t even know it. I saw tired patients, ill patients, worn-out patients. I wasn’t like them—yet.
The stations were divided by movable partitions made of PVC pipes and blue canvas fabric. Each space had two oversize recliners in matching teal fabric facing a wall of windows, with a padded office chair in each corner, a wheelie stool, and a TV on a small stand. Mom had found us a quiet spot around the corner. I was relieved to see that we had the whole station to ourselves. Mom was already sitting in her chair.
As soon as she saw me, she asked, “Are you okay? They didn’t hurt you, did they?”
I took my seat in the big recliner. “It didn’t hurt. We’re all good.”
The nurse assigned to me for the day came over. Dana was calm and unassuming, which made me feel relaxed. While she was hooking up a bag of fluids and another bag of liquid chemicals, she explained how the day would progress.
“This is the first of the four different drugs you’ll have today. Once this bag is empty, I’ll get the next one set up. You’ll have one at a time.”
So that’s it, I thought. That’s the stuff. It looks like water. There’s no way this is going to make me sick. I was listening to Dana but stopped paying much attention to what she was saying. I trusted her, so I didn’t have any questions. I did tune back in when she mentioned the drug Adriamycin, which I’d have later in the day. I knew about that one. It’s nicknamed the Red Devil. I remembered Dad saying, “That stuff’s lethal.” I guess anything with the word devil in it can’t be good, but right then, it didn’t seem like a big deal.
We were all set. Dana asked, “Are you comfortable?”
“Yes, thank you.”
“Okay. Let me know if you need me. I’ll be back later to check on you.”
The new-patient excitement around me subsided—the waving, smiling, introductions, and chitchat had ended, and the nurses faded away. The room became still, and there we were—just Mom and I facing each other. Mom was studying my face, and I think we both winced as the first drop hit the IV tube.
I was proud of the momentum we’d kept up. Mom and I were each doing our part to hold it together for the other. I watched the slow drip of the IV, one drop at a time. And with each drop, I had a different thought. Drop one: here we go. Drop two: I did it. See, it’s nothing. Drop three: I don’t feel anything. Drop four: I don’t feel sick. One drop into the tube, sliding down it and into me, and then the next drop. It was odd looking up at that bag of liquid and realizing that whatever was in there was going to make my cancer go away. My cure was floating in that plastic pouch.
All I had heard about that morning was how potentially ill this chemo could make me. The litany of side effects was endless, so I chose to block them out. Mom, knowing that the two of us couldn’t just sit there in silence willing the time to pass, worked to distract me. She began sorting through the cooler next to her. “Let’s see. What would you like to drink?”
“I’m fine right now.”
“Hold on. I have Fresca, water, ginger ale, lemonade. What sounds good?”
“Mom, I’m really not that thirsty.”
She seemed dejected. “You have to drink something. It’ll help flush the drugs out. Please try a little something.”
So I obliged. And, with that, Mom was in motion. She popped up the tray at the side of my recliner, opened my can of soda, and hurried off to grab a straw. She returned with not only a straw, but also a handful of wrapped candies and mints. As if offering me my choice of diamonds and jewels, Mom held out her hand. “What would you like? Peppermint? Cherry? Butterscotch?”
Staring at the colorful wrappers in Mom’s palm, I realized that those candies and the variety of drinks were probably the only two things holding Mom together. I reached for the peppermint, and Mom was temporarily happy.
An hour later, I started to feel waterlogged and bloated. I was afraid that my worries were beginning to show on my face. I wiggled my shoulders and twisted my head from side to side, hoping that this would shake off the discomfort. I continued chatting (or, more accurately, nodding to prompt Mom to keep the conversation going). But I couldn’t stop the thoughts running through my head. Oh no. I think I feel weird. I couldn’t tell if it was just in my mind. Am I feeling sick because everyone told me I would? Or am I becoming physically ill? I wasn’t sure.
I guess Mom must have seen me trying to fight off the initial effects. She got up, laid the fuzzy fleece blanket that she’d brought from home over me, and tucked it under my feet. “Honey, why don’t you close your eyes and nod off for a bit? Let the medicine do its job.”
Nod off? No. There was no way I was doing that. I wanted to stay in control. Besides, I wasn’t going to leave Mom alone. If I was awake, she’d know I was fine. But the momentum we had kept up all morning wouldn’t last much longer. I found myself looking back up at the bag, the liquid dripping slowly into the IV tube. Mom’s talking stopped, and I felt her zero in on my face. I moved my eyes away from the IV pole and looked down at my hands, tightly clenched, resting in my lap. Mom had moved up next to me. She crouched down beside me and grasped my right hand. I wanted to say something, but I wasn’t even sure what I was thinking.
“What is it, honey?”
My eyes filled with tears. “Nothing.” I closed my eyes, hoping to direct my thoughts somewhere else. Mom waited patiently, and then in a quiet whisper, so low that only she could hear, I said, “I don’t want to be here.”
“I know,” she replied.
A few tears streamed down my cheeks. “But I—”
“I know,” she repeated, stopping me before I could say one more word. “I don’t want you to be here either.”
We made it to the afternoon, and as hard as it is to believe, I was excited to see Dana, with her rubber gloves on and a large syringe in her hand. I knew she was coming to give me more drugs, but I didn’t care. It was time for the Red Devil, which she would have to slowly push through my port over the course of thirty minutes. Mom was relieved that a nurse was present to watch me and give her a moment’s break, and I was secretly thankful that Dana was there to chat with Mom and give me a break. Dana sat on the low stool next to me, screwed the large syringe to the end of the tube dangling from my port, and began gently pressing the end of it. While she was talking with Mom, I watched in amazement and curiosity as the red concoction slowly made its way into my veins. I was told this drug was so toxic that if it touched my skin, I’d get third-degree burns. Yet there it was, going inside me. In a matter of minutes, I began to feel foggy, disconnected, and discouraged. Feeling myself slumping in the chair, I fought with all my might to stay focused and alert.
After all the drinks Mom had forced down me and the steady stream of drugs, it was inevitable that eventually I’d have to get up and make my way to the bathroom. I pushed in the recliner’s footrest, and the back came forward. As soon as I stood up, I felt wobbly, nauseous, and unsteady. I swear, I could feel the drugs sloshing around inside me. My energy was zapped and my feet felt heavy. Mom put her arm around my waist as I grabbed the IV pole, and the two of us shuffled down the hall to the bathroom.
Reaching for the handle, Mom said, “Let me get the door.”
The tile walls and wood door were the only things separating Mom and me, yet I felt terribly alone. In that tiny, cold, sterile bathroom, I didn’t have to smile or put on an act or talk or anything. I just sat there. I didn’t feel well. When I saw the fruit punch–colored pee in the toilet, I knew I was in trouble. I’d thought I could will away the side effects of the drugs, but I couldn’t. I did as Dana had instructed, flush
ing the toilet twice, while marveling at the fact that this stuff was so poisonous that I had to flush the toilet twice before anyone else could enter. As I washed my hands, I studied my face in the mirror. Something was different. The girl in the reflection already seemed changed.
I opened the door to see Mom standing right where I left her. I gave her a very timid smile and a slight nod. The talking, the mindless conversations, the sodas and variety of snacks, her little trips to the candy bowl, were all to distract us from what was going on. But Mom knew what was really happening. Putting her arm around my waist again to help guide me back to my seat, she whispered, “You’re doing a good job.”
As discreetly as possible, I told her, “But, Mom, my pee was red.” It was happening. I was sick.
• • •
By the time we made it back into the car to head home, the drugs had taken over. I propped my head against the window as my insides began to shake. I stayed still, keeping my eyes closed as I listened to Mom repeat, “We’re almost home. Hold on. We’re almost there.” She reached over to rest a hand on my leg. “I’m right here.” That made my eyes tear up and my bottom lip quiver. Mom’s touch was comforting. I knew that I needed her and that I would lean on her. I already had. And I despised this disease for making me do that.
When the two of us got home, we were already trapped in the world of chemo, managing our way through the side effects. I soon found that sitting in the chair at treatment was the least of it. The chemo hit me hard, much harder than Dr. Weens had anticipated.
The profuse sweating began immediately after treatment. I’d go straight to bed and crash, only to be awakened by my drenched T-shirt clinging to my back. Every pore in my body went into overdrive, trying to get rid of the liquid chemicals coursing through me. It was disgusting. My hair would be wet, and beads of sweat would roll down the backs of my legs. I was so weak that I was almost unable to cross the room to my dresser for a change of clothes.
I had expected the nausea. But even with the anti-this and anti-that drugs, I had horrible queasiness. My stomach flip-flopped and convulsed. Mom and I got good at our ice routine, pressing ice packs on my neck, down my back, and over my head to stop me from throwing up. It was necessary, but maddening. The freezing cold would shock my system, lessening the need to vomit my guts out. I’d wait for it to get as bad as I could take, then I’d simply call out, “I’m not doing well.” That was my cry for help. Within seconds, Mom would have frozen ice packs shoved onto my skin. I hated it. I tensed from the bitter cold, the gut-wrenching pain and sickness, but also from the fact that I needed her to do this for me. It would always end with me saying, “Mom, I’m trying. I am so sorry.”
Then there was the tingling of my scalp as my hair began to fall out. My entire body became puffy from steroids, which also left me jumpy. I felt tired and weak, yet wired and awake. I didn’t even know how that was possible, but it was. My vision became blurry, and I experienced alarming amnesia. I also had achy muscles and dry mouth.
I’d been told there was a minute chance that I could get a rare side effect: facial bone pain. And, of course, I did get it—horrifying pain in my bones. I was terrified, yelling, “It’s my head, my eye sockets, my cheeks, my teeth, my chin, my jaw. Is this normal? What’s happening?”
Mom was panicked too. “I don’t know, honey. I don’t know.”
The pain was excruciating. “I can’t take it!” I screamed. The only thing that helped slightly was applying pressure by gripping my face with both my hands. After an emergency phone call and following every possible recommendation from the doctors, I still couldn’t get relief.
My days started to run together, and my life became confined to the couch and my bed. The future seemed daunting, and trying to think of the next day was, at times, more than I could do. I’d open my eyes reluctantly in the morning, hoping to make it to the afternoon, then to dinner, and so on. My days were divided into four-hour increments, from one pill to the next. Sometimes I just wanted it to be bedtime so I could take my sleeping pill. It was never good sleep and only lasted about five hours. The rest of the time, I was awake—fighting, feeling, dealing with it all. But at least I was not alone.
Mom became my full-on caretaker. She watched me around the clock, sleeping on the floor in my room, doling out pills at all hours of the day and into the night, keeping medicine charts and schedules, giving me the shots I needed, rubbing my back for hours hoping I’d nod off, and making snacks and buying different drinks, even though I would only be able to take one bite or one sip. She listened to any and all of my concerns, complaints, and fears. As the weeks and months went by, the chemo had a cumulative effect, and by the end, we were both sort of going through the motions. Chemo had become our full-time jobs—caretaker and patient. And I felt incredibly guilty. She had other things she should be doing, like working on her dessert business or helping the other kids or running the household.
Late one night, I laid awake in bed, clenching my pillow, hoping the pain would lessen. The sicker I got, the more afraid I became that I was failing. The weaker I grew, the scarier it was. What’s happening to the cancer? Is this stuff working? Mom, sleeping on a pile of pillows and blankets on the floor, heard my pathetic whimpers and sat up next to me.
I whispered, “I’m not doing this well.”
“Yes you are,” she said.
“No I’m not. I had no idea. What about Dad? He wasn’t this bad.”
“Yes he was. He didn’t want you kids to see.”
Distressed, I asked, “What about Aunt Sue?”
“You’re doing a good job,” she insisted. “A really good job. She would be so proud of you.”
The chemo also created what seemed like a permanent metallic taste in my mouth, as if I were constantly licking an aluminum can. That was compounded by the rotten taste that rose from my throat and lingered on my tongue—that atrocious taste alone was enough to make me nauseous. My taste buds had gone wacky too. I craved anything with a strong flavor that might give me a temporary release from these awful tastes. I’d ask Mom, “Can I have bacon?” only to be able to eat one bite.
The worse my symptoms were, the more upset I became. It only happened once, but I won’t forget the time that I was so worn out that I called Mom to my room to talk. “What are my odds?” I asked her. “What would happen if we stopped all of this?”
When it dawned on her what I was asking, she was furious. “I am telling you—you need this treatment!” Of course, I wasn’t really going to stop chemo. I just wanted to pretend for a minute that I could if I wanted to.
I was lucky I had no commitments other than getting well. That was my sole purpose. Thanks to my parents, I was afforded the luxury of being able to sleep, lie around, watch TV, and do nothing—but that wasn’t always easy. I had no work, no career, no apartment, no place of my own, no bills, no rent. I sold my car. I had very little money. I had graduated college, and now I was stuck in this terrible limbo. As thankful as I was that my only job was to get through treatment, it was also hard feeling like I didn’t have anything really going for me. Sometimes I felt like a little kid who needed her mom; other times, I just felt old.
One afternoon, I traded my bed for the couch in the family room. I was trying to watch TV (Oprah at four o’clock was part of our daily routine), but I’d taken a slew of pills that made me doze off. I woke up to see Mom standing over me with a tray of hot cookies. They smelled great, but I wasn’t sure why she had brought the whole tray in. Holding it out to me, she said, “Don’t these look nice? I thought they might sound good to you. Want to try one?”
I’d never seen her bake these cookies before. They were little, light-brown cookies with sugar on top that sparkled almost like glitter. Not one of Mom’s usual elaborate creations. So I said, “Well, I don’t know. What are they?”
“They’re gingersnaps. Just try one.”
The aroma was enticing
, so I took a bite. The cookie was crunchy and light. The flavors were warm and comforting—cinnamon, ginger, and cloves. It melted in my mouth, and I could actually taste it, which was never a given these days, considering my whacked-out taste buds. It was delicious.
Dear Sue,
I didn’t like leaving the house when Ken or Susan were sick, but there were occasions when I had to run a quick errand. I’d wait until someone else was home.
I was at the post office, happy to stand quietly in line for a few minutes—a few minutes of peace. Soon, there was one person in line behind me, then two. Apparently they didn’t know each other, but they became fast friends, mutually grumbling, “Look at this line. Will you look at how inefficient they are here? There is always a wait.”
I looked back, thinking, Must you? Do you really have to complain?
They mistook my interest and prompted me to join them. “Don’t you think this is ridiculous?”
The employees were aware by now of the unwarranted criticism, and although I tried, the glares I directed at these two weren’t stopping them. I started to get annoyed. I couldn’t help but think of the hundreds of people I’d seen come and go through Dr. Weens’s office over the years who would have loved a chance to be out and about, running an ordinary errand. Not to mention the girl I had left at home on my couch.
Soon there was another comment. “These postal workers can see all of us waiting, and they’re not making the slightest effort.” I wasn’t just irritated by the remarks now; I was also embarrassed and didn’t want the employees to think that my place in line put me in cahoots with these two loudmouths.
As my transaction was pleasantly and efficiently completed, my anger got the better of me. Sue, you won’t believe what I did! I made a split-second decision, thinking, I’ll show those two, and I spun around. “Excuse me, there,” I began, addressing them directly. “How dare you stand there and complain, criticizing these hardworking people?”
The Cookie Cure Page 6