by Sara Arnell
“My white cell count?”
“Yes. Please get the last bloodwork you had done from your internist and have it sent to me. I need to see a baseline.”
I realized I hadn’t been to see my regular doctor in two years. My older daughter was right. I needed to see my internist. I made an appointment with him for a checkup. As doctors are apt to suggest to people who seem completely healthy and have no physical complaints, he said, “I’m sure it’s nothing.”
Chapter 28
You Can Scream If You Want
It was a beautiful summer day. My older daughter had just booked her ticket to come to New York for a visit. I owed her some good, quality cough-free time. My trip to see her in Los Angeles a few months prior in March was not what we had hoped. She had been right; I shouldn’t have gone out there to see her. I had spent most of my time in bed.
“I can’t wait to come home,” she said.
“Thank you for taking such good care of me when I was in LA this spring,” I said.
“The parental tables have turned,” she said.
“It was just a bad cold,” I told her. “I’ll let you know what my internist says. I’m getting another blood test today. It’s the third one. I hope it’s the last.” I switched topics to more happy thoughts. “I want to show you the new house. It looks like something from Ancient Aliens,” I told her, knowing her proclivity for all things mysterious. “Circles have incredible meaning,” I reminded her. “It needs a lot of work, but you’ll understand why I love it the minute you see it.”
“I heard,” she said. “It’s kind of like the one in your Slim Aarons photo.”
“Yeah,” I said. “This was all meant to be. Sometimes I think I willed this house into existence.”
“Maybe you did.”
“It’s weird,” my internist said.
“What’s weird?”
“There’s something wrong with your white blood cell count, and it’s weird. You need to see a hematologist.”
“What? When?”
“As soon as possible.”
“Can you tell me what you think it is?” I asked.
“Your lymphocyte count is too high, which means you could just be fighting off an infection, but you should get it checked out.”
I mumbled an “OK,” and he gave me the names of two specialists to contact. The first didn’t have an available appointment for two months. I couldn’t wait that long. The other could see me the following week. My older daughter had arrived from LA by this time and, along with my younger daughter, we went to see the hematologist, not knowing what to expect or even what was going to happen at the appointment. I was glad they were both with me.
“Don’t worry,” I told my children. “I feel fine. I’m on a new diet from my other doctor. It’s that cold I got from moving. It’s still lingering. I’m sure of this.”
“Hopefully,” they said without a trace of optimism. I recalled a time a few months earlier when my daughter had pointed to a large and dark bruise on my thigh. “What happened?” she had asked. “I don’t know,” I’d responded. This wasn’t an uncommon occurrence.
“We Googled ‘too many lymphocytes in the blood,’” my older daughter said. “Sometimes it’s a symptom of blood cancer.”
“I Googled it too,” I said, “and it’s also a sign of an infection, like from a cold, so I’m not worried.”
“Colds don’t last seven months,” my older daughter said.
“The doctor said your tumor was growing for about three months before you felt it. Things take time,” I said. “The body works at its own pace.”
“You’re not making any sense,” my older daughter said.
“What do you mean?”
“It’s completely different.”
We were led into the doctor’s office, where he was sitting behind his desk, drinking a Diet Coke and brushing away the crumbs from a just-consumed sandwich. He pushed his glasses to the end of his nose and read several pages of the lab report sent to him by my internist. He said that it wasn’t very impressive, in an attempt to put us at ease. We were staring at him like deer caught in headlights. My older daughter whispered in my ear that doctors should know better than to drink a Diet Coke, and maybe we should look for another one. “Maybe,” I whispered back.
“Your white cell count is off, but not to the point where I would even diagnose you without a test. You need a bone marrow biopsy,” he concluded.
My older daughter burst into tears.
“Ok. When?”
“Now.”
“Oh, I’m not really prepared for this now,” I said.
“Why not? It will take ten minutes. You can either do it now, while you’re here with them,” he said while gesturing to my girls, “or you can come back, but you need it done.”
“Does it hurt?”
“Yes. It hurts. I’m going to stick a needle through your hip bone and extract bone marrow. You can scream if you want, but you can’t move.”
OK. He’s got a sense of humor, I thought, and appreciated that he was honest while trying to lighten the moment. I looked at my girls, holding hands, my younger daughter consoling her older sister, who had begun to panic. They nodded.
“Let’s do it,” I said.
He led me into an examination room and told me to pull down my jeans to my knees and lie facedown on the table.
“Should I take my shoes off?” I asked
“I’m not going to touch your feet,” he joked.
The doctor pushed hard on my lower back trying to find a place where he could stick a long needle through me and into my hip bone. When he located the place, he asked his assistant for a sharpie and marked it.
“I’m going to inject local anesthesia,” he said. “We’ll get you as numb as we can.”
All of a sudden, I heard a scream from the doctor’s office where my daughters were waiting.
“They probably just Googled ‘bone marrow biopsy,’” I said.
“Then they should know you’ll be fine.”
The doctor cleaned my lower back with Betadine multiple times and draped a paper sheet over me that left only the area he was working on exposed. He left the room.
“Don’t worry,” the assistant said.
“Does he do this procedure a lot?” I asked.
“Yes,” she said. “He’s one of the best.”
After giving the anesthetic enough time to do its thing, he came back into the room and told me to lie still.
He emphasized how important it was for me not to move. I felt his finger pushing on my back, then he inserted the long needle through my hip bone with a strong, swift plunge.
It’s not so bad, I thought.
Then he began to suck out my marrow.
“Don’t move, don’t move,” he chanted slowly and forcefully as I let out a blood-curdling scream.
“OK,” he said, “we got enough liquid; now we’re going to take a sample to biopsy.”
“All done,” he said as the assistant put pressure on my back to stop the bleeding. They bandaged me with a giant lump of cotton and told me to roll over on my back and keep pressure on the bandaged area. They said they’d come back in twenty minutes to check on me.
“Can my daughters come in?” I asked
“Of course,” he said, “but don’t sit up. Keep pressure on the wound.”
“I won’t move,” I assured him.
“I’m fine,” I said as they came into the room to sit with me. I saw their red, swollen eyes.
“We heard you screaming,” they said.
I drove home to show them how OK I was. “I’m fine, I can drive. No worries,” I said.
When we got home, I walked in the front door and crawled into bed. I wanted to turn on the gas fireplace and stare at the flames. I wanted to subdue the anxiety that was ab
out to overcome me by focusing on the fire. But we had run out of propane during the winter, and the fireplace wasn’t working. I’m starting to hate this rental, I thought.
“I’m going to nap,” I yelled to my daughters who were in the kitchen making tea. I buried my face in the pillow and breathed deeply, with purpose, and forced myself into a state of calmness.
Chapter 29
You’re Going to Do Great
I waited for my son and his good friend from high school to arrive. We were meeting for dinner at a favorite Italian restaurant on the Lower East Side. They got there as I was finishing a phone call that I had answered while waiting at the table, sipping a glass of red wine.
The call took less than a minute. It probably took less than thirty seconds in actuality. It was the end of the day, and the doctor was going down his list, like a grim reaper, letting his patients know their test results.
“Hello,” I answered.
He got right to it. “OK. It’s CLL. You’re going to do great. Come back in two months.”
“Um. OK.”
“OK. Bye now.”
And that was it. This was my diagnosis. That was the call that would define something about me for the rest of my life, however long that would be. I didn’t really know at that point. I had more questions than answers.
I turned to my son and his friend and said, blankly, “I have leukemia.”
“Oh shit,” they said almost in unison. I saw the shock in my son’s eyes.
There was silence.
“Let’s get a bottle of wine. We need wine,” I said as upbeat and joyfully as I could. In an attempt to reassure him, I said, “Listen, the doctor said I am going to be fine and not to worry. And I don’t even need to go back to him for two whole months, so it really can’t be that bad. What do you feel like eating?”
We finished two bottles of wine with dinner and never mentioned the call from the doctor or the diagnosis again. I was surprisingly calm. I felt safe, somehow. I felt like this was going to be good in some way, just like the doctor said—that something very positive would come from this. A feeling of relief, not panic, was enveloping me. At least we know something now, I thought. I went home after dinner and emailed my mother and sister.
The entire body of the email was just three letters: CLL.
I woke up for the next three nights in a row at around 4:00 a.m. I couldn’t get back to sleep. I worried that I was going to be exhausted and assumed it was stress. I didn’t feel stressed, but maybe my body knew something I didn’t. Maybe all of the old stress along with the new diagnosis was floating around in my veins. I hated waking up in the dark. I didn’t know what to do. I struggled between turning on the TV or trying to fall back to sleep. I felt paralyzed under the covers, waiting for the sun to rise with its permission to get up.
I thought of a former Buddhist monk that I had met at a book fair. He had written a book on darkness. I remembered what he said about waking up in the middle of the night.
“I get up and take a walk about 2:00, every morning,” he said.
“Aren’t you afraid?”
“When people see me walking on the road at 2:00, they think I’m the bad one, so I’m mostly avoided and left alone.”
“The incandescent light has changed our circadian rhythms,” he said. “Once upon a time, before the light bulb, people went to sleep just after dusk, slept for four hours, got up and did chores, work, or creative things, then went back to sleep until the sun rose. Those waking hours, between the dark and daybreak, are called the Hour of God. Great things happened during the God hour. Symphonies were written. Art was created. The Declaration of Independence was mostly written during the God hour. It’s an in-between time where we’re most open and vulnerable. We’re able to tap into our creativity. The channels are open, and we are moved by our spirit to unexpected and immeasurable results.”
“When you wake up,” he said, “sit up or get up. You don’t have to take a walk outside. Write in a journal, work on a creative project, paint, compose, or ponder the night, but don’t fight it,” he suggested. “Thoughts will come to you. It’s a magical time. We’re hardwired to sleep in shifts. It’s natural.”
I didn’t want to wake up and write. I wanted to sleep and heal. I wanted a full night’s slumber to cut my lymphocyte count back to normal. I wanted to fight off whatever was causing this. I had faith. I believed in the God hour, but I wasn’t writing a manifesto or creating the next groundbreaking piece of art. I was scared. No, I thought, I can’t get into the habit of waking up at 4:00 a.m. and journaling. On the fourth night, I woke again at 4:00. I sat up, like the former monk had instructed, but instead of writing, I talked to the darkness.
“Hey,” I said. “I am alive and awake and here. I want to live and thrive and be healthy. I want to see my children grow old and have children of their own. I want to bounce a grandchild on my knee. Keep me alive. Help me fight this. If you could keep me alive until I’m somewhere in my nineties, that will be enough time for me here on earth. I’ll be ready then to get rid of my body. I know I’ll still exist as energy and consciousness, but I’m not ready to get rid of the physical me yet. Help me, please. Help me,” I begged.
I sank back into my pillow and fell asleep. This was the last night I woke at 4:00 a.m. The monk had been right. I felt like my angels finally had a request they could accomplish.
Chapter 30
Heal Yourself
Everyone I told about my diagnosis had a suggestion. One friend, I can’t even remember who, told me to get a book called Getting Well Again. It was one of the few useful suggestions in a blur of information. The advice came at lightning speed, and most of it felt empty—the words of people who wanted to feel like they were helping when they had no ability to help.
“You should get more sleep.”
“Exercise. You can literally work it out of you.”
“No meat. No dairy. But you can have egg whites.”
“I know a doctor who will give you infusions of vitamins.”
“A green juice every morning will cure you of everything.”
“Stop coffee.”
“Sugar is the enemy.”
“Get a blood transfusion. Keith Richards used to do this to get sober, or so I was told. It can clean your blood.”
But the book was one of the better ideas. It was on Amazon. I downloaded it on my Kindle. I’ll start here, I thought.
The online blurb about it said the book was a classic from the seventies. The couple who wrote it were pioneers in mind-body medicine. They taught that a person can almost think their diseases away. Their patients lived longer than expected. Some went into remission or were totally cured. The mind is a weapon in fighting disease, they believed.
I’d like to weaponize my mind, I thought. But I couldn’t even say the name of my disease. I was afraid to utter the four syllables that made up the word: Leu-ke-mi-a. I thought if I said it, it would make it too real. If I uttered it even to myself, it would mean I was acknowledging its presence. I wanted to ignore the finding. I wanted to push it back in my mind and let it lie dormant. This is the problem with medicine today, I tried to tell myself. My diagnosis was an “incidental finding.” In the 1800s, no one would even know they had this. It wouldn’t be an issue. No one would have to worry if every little twinge, itch, or pain was your blood getting ready to spoil. (I ignored the fact that this also meant, in the long run, more pain, suffering, and death.)
The book said to visualize your cancer leaving your body. I sat quietly in my room, waiting for a vision come to me. I remembered sitting on the front porch of my childhood home with my Aunt Nell, shelling peas. She had the unshelled peas in her lap, nestled in her apron. The fresh peas were thrown into a bowl at her feet. I visualized her picking the extra lymphocytes from my blood and collecting them in her apron, like she was harvesting berries. I wished I hadn’t seen a
doctor for weight loss who’d tested my blood. I wished I was ignorant to what was happening inside my body. I wished, once again, that I could turn back time.
Getting Well Again was in good company, I noticed, from the suggestions that appeared on Amazon after I bought the book. There’s a lot to read, I thought. I need more perspectives. I need to hear more. I wanted to know what therapists, caregivers, patients, and mystics had to say. I wanted to know if angels intervened, if hope prevailed, if positivity was a drug. I needed to read about people whose terminal cancer disappeared because they willed it away with a cocktail of hope and flat-out denial. Denial. That was my drink of choice now.
I read a story on Facebook about a woman who had an out-of-body experience while in a coma, met her father on the way to heaven, and got sent back because it wasn’t her time. She opened her eyes while in the intensive care unit, tubes and machines hooked up to almost every one of her failing organs, and came back to life. She completely recovered over the next several months. Miracles happen, I thought.
I scrolled my Instagram feed for inspirational quotes, which I saved, edited, and put in an album on my phone to read when I needed a boost—a reminder of hope and words of wisdom. I Googled my disease relentlessly to find survivor stories. I read about a man who said he cured himself with a routine of vegetable juicing and exercise. I bookmarked the link and added it to my favorites bar. I stalked message boards and monitored a forum from England where people described their symptoms in great detail while all noting that these same symptoms could be from stress, exhaustion from work, or just aging. Their blood said, “You’re sick with something that there’s no cure for,” but their minds and bodies said, “Life goes on and you could be a lot worse off.” A lot of them had the same symptoms, the same complaints, and the same frustrations—tiredness, swollen lymph nodes, bruising, frequent colds, aches, and pains. “These are my people now,” I said with a hormonal rush of pride. I wasn’t alone.
