by Sara Arnell
“I’m here,” I said aloud to the faces on my computer screen. “Keep talking, because I need to understand what’s happening to you so I know what’s happening to me.”
“You give me strength,” I told the photo of a woman named Marie who said in an interview that she was finally able to recognize her symptoms and deal with them.
Alex said he was tired but, then again, he told the interviewer, “I’m eighty-seven years old.”
Jane could only garden for half the day instead of all day, and Diedre stayed positive by reminding herself that there were people sicker than she was.
Len was pissed off. “Yeah, Len,” I said, “I’m with you. I wished I had never gotten that blood test. Knowing something you don’t need to is its own kind of trauma. Fuck this shit, Len. Knowing sucks. And now, you don’t think you can get long-term travel insurance, so you’re grounded. Your wings are clipped, Len. I truly understand,” I said with all the compassion I had.
I can learn from Len, I thought. He was brave and open and honest about hating this disease. He was frank about how pissed off he was that a blood test redefined how the world looked at him, how he was now a sick man that felt fine.
I tuned in every day to websites, forums, and message boards to read and reread. I watched them with the enthusiasm of a new season of The Real Housewives of Beverly Hills and my other Bravo reality show addictions. I watched a video made by a man who was no longer in remission and was about to go on another round of chemo. He was pretty sure it would work again. He was trying to gain weight before the chemo made him nauseous and unable to eat. I loved his perseverance and proactiveness. I rooted for him. “Eat what you want,” I said aloud as if he could hear me through the computer. “Eat your heart out.”
I read the story of someone who didn’t tell his adult children that he was diagnosed as he didn’t want them to worry. They had enough on their minds with their own jobs and families. He told his doctor that if he could be kept alive until he was eighty, he would die a happy man. He made it to seventy-seven. I read story after story about people who kept their disease to themselves as they didn’t want to be seen and/or defined as “sick.” They wanted to preserve normalcy for as long as possible. As I began to realize that the skinny man who needed to gain weight had been living with this disease—my disease—for seventeen years, and was more worried about what his wife would think if he became too thin than about how he would ultimately feel, I felt a swell of appreciation for the strength of others.
A woman with children was worried about the exhaustion that was a common symptom, so she was sharing her system for cooking and organizing meals for the family. It was well conceived, and she thought others could benefit from it too. Online, everyone had the same preoccupations. They were like a coffee klatch, sharing their tips and tricks for survival like they were swapping recipe secrets and crafting ideas. I admired that what brought these people together in the same virtual spaces was their desire to help each other, to listen, and to share.
It made me think about my conversation with the sister missionaries. They were right, I knew. They said that God would save me. The God that I was witnessing in the forums, sites, and message boards was the God of human compassion, care, and kindness. I saw God in the details of helpfulness and shared experiences. It was a more human kind of Godliness, born from suffering and the desire to live. I thanked the God of my youth and upbringing and the Gods of helpfulness, love, and care that spoke from the ether to whoever needed to hear their message. I picked up the pile of wet tissues that I’d thrown to the floor as I scrolled and read for hours. My eyes were red and swollen, and I could barely see through my tears.
It’s time to close the laptop, I thought.
Chapter 31
I Can Smell Cancer
The fragrance store on East Fourth Street in New York’s East Village was filled with large apothecary-style bottles of pure essences. Each bottle had a long dropper attached to the side for blending custom scents. The process for creating your own fragrance was to smell every pure essence and pull out the ones you wanted mixed together to create your own special blend—one that you could even name. The blender would keep the secret formula on file so when you ran out, you could just call for a refill.
My daughter wanted a fragrance that reminded her of Grandma’s house, the home where I grew up that she loved to visit. The scent, we agreed, was a combination of clean laundry, houseplants, old newspapers, magazines, beeswax, chocolate, burnt toast, and vague seventies musk. I found it funny that there were no fragrance notes of a home-cooked meal, cookies baking in the oven, or an apple pie cooling on the counter. There was always a candle burning in a small glass votive, and chocolate could be found in a small bowl or dish somewhere in the vicinity to be picked at throughout the day. Plants, herbs, and flowers from a farmer’s market or green grocer were arranged on the kitchen counter, adding color and life to the scene.
In the end, it took about eight bottles of essence to make our fragrance.
“The smell of my grandmother is the best scent in the world,” said the woman behind the counter. “It’s the reason I do this now. I wanted to make her scent so she could always be with me.”
“We understand. We’re doing the same thing, in a way.”
“Before I opened the store, I was a nurse, but I had to leave. I couldn’t do that anymore.”
“Oh. Why?” I asked, wondering why she would leave a nursing job to open a tiny fragrance shop in Lower Manhattan. She probably doesn’t even have life insurance anymore, I mused.
“I can smell cancer.”
My daughter gave me a little nudge, out of her view.
I leaned in, to get closer to her. To get into range.
“You can smell cancer?” I repeated.
“Oh, it’s terrible. Sour. Yuck,” she said as she stuck out her tongue and made a face.
I continued to lean in over the counter to get as close to her as possible. I think she thought I was trying to see the secret fragrance formula she was writing down on an index card. She pushed the card to the side and moved away from me.
Smell me, I thought. Smell me and tell me what’s wrong.
When we left the shop with our custom-blended scent that was really nothing like the scent of my mother’s house but would now be the stand-in for it, I said to my daughter, “She can smell cancer.”
“I thought you were going to fall over the counter trying to get her to smell you,” she said, smiling.
But she didn’t. She couldn’t smell it. My cancer was undetectable to her. This could be good news, I thought.
“Maybe it’s not that strong yet,” I said with hope and optimism.
Things began to sink in. In the face of my diagnosis—as I dealt with shock, dismay, sadness, fear, and the specter of a future not anticipated or desired—I was calm and collected. I wondered if this was the result of my meditation practice. Stay and play, I reminded myself.
I freaked out more about a spill or stain on a rug than I did about having a type of blood cancer. I was oddly composed. I was surprisingly OK. I felt in control of everything. I felt a new strength and certainty. I wondered if I could assert my condition and make it work for me instead of against me.
But the fact was, I was idling, like a car at a stop sign. My foot was on the brake, waiting to take off when the coast was clear. My hands were at ten and two on the wheel. Safety was still important. I didn’t get the kind of diagnosis that caused you to want to go skydiving—to fuck it all. Wait and watch, I was instructed.
“This disease progresses slowly,” my doctor said.
“But time flies,” I told him. “I have so much to do.”
“Come back in six months for another blood test,” he replied.
“So I need to live my life in bursts of six-month intervals?”
“You can come in every two months if you wan
t.”
“That’s even worse,” I told him. “At least I have a chance of forgetting about it over six months. If I have to come every two months, I’ll never get it out of my mind.”
I pushed myself to be grounded, so composed and rational, because I knew that I would make myself sick if I lost control. I needed to channel the happifying chemicals that lingered in my brain and release them into my blood to calm things down, to speak to the lymphocytes that were out of control and reproducing at an abnormal rate. I needed to reconcile the possibility that I might never need any kind of treatment, including chemotherapy, or I might need it next month. Next week. Tomorrow. I am straddling two worlds again, I thought. One where I am healthy and well and one where I am sick and getting sicker.
Chapter 32
The Thing
“I’m calling what I have ‘the thing,’” I told my daughter. “I can’t give it power, so we can’t say its name.”
“I understand.”
“This is the only thing in my control with this disease. I can’t let it win. I can’t give it energy. I need it to get out of my psyche and then maybe it will leave my blood. I know the doctor said there’s no cure, and that he’s never seen a case of spontaneous remission, but I’m determined to be the first,” I said.
“I have this thing,” I told my guru in a one-on-one discussion.
“Tell me about this thing,” he said.
“It’s my blood,” I told him. “I have too many lymphocytes. This causes stuff to happen to me. I get a lot of colds. I bruise really easily. I get exhausted for no reason. Sometimes I have muscle aches and pains. Sometimes my skin itches so badly that it feels like I have worms crawling beneath its surface. My immunity is compromised. I can’t travel to places like India, with you, where I could get sick. I can’t fight infections as well as before I got this thing. My body fights every day now to keep it at bay. I can’t take my immune system away from the job it needs to do. I can’t change its focus to something else, like a virus.”
“Does the thing have a name?” he asked.
“Yes. But I don’t like to say it. I’m afraid to say the name of it. I feel like if I say it, then I have it.”
“Then just say ‘next,’” my guru said.
“Tell me what you mean?” I asked.
“Move on from it,” he said. “It sounds like you already have to a degree. See the doctors you need to see, then just say ‘next’ and keep going. Live your life.”
“Next,” I repeated.
“Next,” he confirmed.
But saying “next” proved not to be so easy for me.
“I have a pain in my right side,” I told my daughter. “I’m really nervous.”
“You need to see your doctor,” she said.
“I know. It might be inflammation. I’m not eating as well as I should. I’m paying for it now,” I said.
“You don’t know that.”
“You’re right,” I told her. “I’m worrying about something that I know nothing about.”
The doctor ordered an abdominal CT scan, with contrast. I sat in the hospital waiting room drinking down a yellowish liquid that would help things show up more clearly to the radiologist who would be reading my scan. It took about ten minutes once I climbed onto the machine. I took several deep breaths and held them as directed by the voice that spoke to me through speakers.
“Your scan is clear” were the words on the text message I read from my doctor a few hours after I left the hospital.
I texted her the thumbs-up emoji.
“Hey,” I said to my daughter. “All’s well. They didn’t find anything wrong. The doctor told me to take it easy for a bit and see if it gets better.”
“Great,” she said. “You know, it’s good to be careful, but it’s not good to panic over little things. Not every pain means something fatal.”
“I know,” I told her. “You’re right.”
But when I wasn’t with her, I fell apart.
I lay in my bed and poked the spot on my stomach trying to see if I felt anything, trying to see if it hurt more or less than the last time I poked it.
I curled up in a ball on my bed.
I hugged my pillow.
I crumbled under the weight of my own uncertain future.
Then other things started to happen. I developed a pain in my left cheek and ear. I felt a burning sensation that came and went. I went back to my doctor who sent me to an ENT. “It might be your sinuses,” she said.
I went to the hospital for X-rays of my head and neck.
I got the same text as before.
There was nothing wrong.
I was fine.
“Wait to see if it stops.”
I sent her back the thumbs-up, again.
I was strong and brave when I needed to put on a face of survival for other people, and I was a little girl when I was alone—scared and tentative—imagining things that weren’t really there, like a monster under the bed.
The good news I received from the doctor for the second time seemed to confirm that anxiety was getting the best of me. Each time I sent the thumbs-up emoji, my pains and sensations slowly dispersed along with the tension that ran down my spine and across my shoulders.
“Next,” I said as I readied myself for meditation. I sat for a few minutes, quietly thinking about how I needed to be clear and intentional with my thoughts and actions, how I needed to be practical and rational and in control. It wasn’t so easy to do this when something took me by surprise, when I felt overwhelmed and overcome by the enormity of life and death, when I became attuned to every unexpected or new bodily feeling.
Why I was tired when I had a good night’s sleep.
Why my lower back hurt when I had done nothing to cause it pain.
Why my heart was pounding in my chest when I hadn’t moved a muscle.
Why I was so…
Angry
Afraid
Panicked
Desperate
When I could be…
Resolved
Calm
Practical
Disciplined.
Choose your thoughts about things that you see or intuit or believe, I told myself. Choose a perspective that helps you. Choose how you want to feel and how you want to proceed. You can do this. You have the power of perspective and you need to use it for your benefit. For your sanity.
“Don’t leave me on the roof, God,” I prayed as I settled down to meditate and release some of the stress in my body that was causing me to feel things that didn’t really exist.
The next time I opened up Getting Well Again, I read about Jerry. He was diagnosed with lung cancer that had spread to his brain. The day Jerry received this news, he quit his job, settled his finances, and then sat in front of the TV. Within twenty-four hours of giving up on his life, Jerry began to experience pain and exhaustion. He didn’t respond well to radiation treatment and within three months, he was dead. Then I read about Bill, who had the same diagnosis as Jerry. Bill kept working, took some time off to do things he enjoyed, joined a support group, and, after radiation treatment, was virtually symptom-free. I want to be like Bill, I thought. I want to outlive any prognosis I’m given. I want to live my life, not wait to die. I don’t want a precipitous decline to do me in. I want a miracle. I want to be a medical miracle. I want to be studied at every medical college and cancer institute. I want to be the epitome of hope and healing for other cancer patients. I’m out to prove that spontaneous remission is real, if you can just believe that it is. I need to be the version of me that fights.
There were many versions of me I had come to know since my diagnosis. My moods, feelings, and prospects for a healthy, happy future fluctuated with every twinge, gas bubble, burp, and unexplained ache.
There was a version of me that collapsed on
the floor with crippling anxiety, needing to be picked up.
To have my hair stroked.
To be told everything will be all right, baby.
To be cuddled in loving arms.
To be handed a cup of tea and told to drink it because it would make me feel better.
There was a version of me that said, “I’ve lived more than half my life by any measure, and if I die tomorrow, I’ll be OK with that.
“I’ll be OK with not fighting.”
“I’ll be OK with giving up.”
“I’ll be OK with not trying to take control.”
“I’ll be OK with crawling into bed and staying there until someone has to carry me out.”
“I’ll be OK with being numb and self-indulgent and just for once, in all my adult years, thinking only of me and my immediate comfort and concession to the inevitable.”
There was a version that said, “Fuck this shit, I’m going on a meditation retreat in India,” which was the one place my hematologist told me I might want to avoid.
There was a version that asked, “How did I end up in my fifties with this haircut and saggy boobs?” Maybe I deserved to just disappear from the earth and spare everyone from the catastrophe I had become.
I walked to my bathroom and looked in the mirror. My face was streaked with tears. I was sad for Jerry. I didn’t want to end up like him.
I stared at myself. Stop it, I commanded.
I cried again.
Shit.
Fuck.
Why can’t you get it together? I pleaded to my reflection.
I rinsed my face and tried to smile, tried to force happiness to appear.
What would Len do? I thought. I wished I knew Len. I didn’t even know if Len was still alive, living somewhere in England, pissed off because this disease—our disease—was keeping him from traveling the world with his wife.
Why couldn’t I be pissed off and face this, too, with fury instead of fear?
Why was I so pitifully sad and feeling sorry for myself?
