September 3, 2003: Diagnosis Day

I was having an odd dream during the early morning hours of September 3, 2003. In it, Marilyn and I had a loft apartment in a big city, and we were hosting a party during which we were showing off some modern art on the walls. At one point, I found myself sitting in a chair and was about to stand up when one of the guests said, “Don’t try to stand up! You’ve had too much to drink.”

That’s odd, I thought to myself in the dream, I haven’t been drinking. This contradiction brought me to consciousness, and even though my eyes were closed, it felt like the room was spinning, as if I had actually been drinking. It was an odd sensation, and not a pleasant one, and I wasn’t sure if I was still dreaming, or if I was waking up.

I opened my eyes and the room was, indeed, spinning. I felt nauseous. This had never happened to me before, drinking or no. Slowly I managed to sit on the edge of the bed. The chair opposite was moving gently, up and down, as if it were on the deck of a ship. One grows used to the idea that one’s eyes always tell the truth, and that the signals they send accurately help direct the movements of the body. It is scary when, after half a lifetime, things go haywire. When I stood up, I was unable to walk straight, and had to grip the walls to make it to the bathroom.

Just give me a minute, I thought to myself. I can figure out what is going on.

I am not a panicky type, nor am I a hypochondriac. Until that morning, I had seldom visited the doctor. I had graduated with honors from the school of It’s No Big Deal, I Can Get Over It. And indeed, whether I had a cold or hay fever or a bad headache, I had always managed without too much fuss. I could even handle minor dentistry without novocaine.

But I knew, as I looked in the bathroom mirror that morning, that I was not going to feel better from this without some help. I was turning whiter than white and sweating profusely. Am I having a stroke? I wondered. I was almost 47 and out of shape. I puked in the bobbing sink and then sat on the toilet for a few minutes, watching in the mirror opposite as sweat cascaded from my wet hair down my face. It was not getting better.

I gathered my sea legs and made my way back to the bedroom, where I woke Marilyn, and she drove me to the emergency room. I held a wastebasket in my lap, into which I continued to pour whatever I had eaten the night before.

I was immediately admitted to the ER and escorted to a bed, where I was suitably engowned and then hooked up to an IV bag of Phenergan, which for the next hour appeared to me to be the single greatest invention in the whole history of mankind. Slowly, as the drug suffused through my veins, the nausea began to vanish, the walls began to straighten, the ceiling lights assumed a fixed position in the acoustic-paneled firmament.

Marilyn sat to my right, holding my hand. The doctor would have to run some routine tests, but it wasn’t a stroke. I would be home by noon. They marched me through some X-rays. I was hooked up to an EKG. Some blood was drawn. The curtain to our cubicle was pulled and we waited, secure in the knowledge that the emergency was growing less acute as the minutes went by.

It gets worse

After a short while, there was a rattle as the curtains were drawn back. A thin, gray-haired nurse walked in, a little too rushed and businesslike.

“Have you ever been diagnosed with leukemia?” she asked.

“No,” I responded, as a knot began to grow in my already overworked stomach. The nurse turned and left us, abruptly, on her way to something important.

Marilyn squeezed my hand. We looked at each other.

Leukemia?

Neither of us knew much about it, except that we knew it was something that affected children, and we assumed it was usually fatal.

I fought off a tendency to think that it can’t be true. Laying in a hospital bed, exhausted from my vertigo and vomiting, was proof enough that something was wrong with my body. My survival instinct kicked in, and I somehow found the strength to hold it together and deal with the news. There would be no rest, no welcome dozing, no letting go.

Tears began to creep down Marilyn’s face. Abruptly awakened from very little sleep, she had been coping with the unknown all day; now circumstances had forced a new role upon her, one of a helper who often feels helpless, a watcher of fate. There would be no going back to that morning before my dream, or to last night, or to last year, or to any time when health could be taken for granted and life could be lived as if there would always be another tomorrow.

A young orderly came in, fresh-faced and well-scrubbed, as if minted from some technical school for medical assistants that is advertised on afternoon TV. He proceeded to tell me, in almost breathless and excited tones – as if this were making his day – that my white blood count was 144,000, and that normal was somewhere between 4, 500 and 11,000. He said something about lymphocytes, which in my case accounted for 129,600 of the total, and then prattled on about other types of blood cells that I had barely heard of. I had not had a CBC -– complete blood count -- in seven years, thanks in part to changes in health insurance that tended to obstruct, rather than enhance, medical care. I’d had my cholesterol checked a couple of times at health fairs, and I’d even donated blood the previous year, for which they perform a rudimentary screening, but not for leukemia. Being middle aged, I had assumed heart issues were my primary concern, and that there was little value in a full blood panel.

In retrospect, as I will explain more fully in another post, my ignorance was probably a blessing.

The longest ten minutes, ever

The doctor came in and the orderly left, wheeling the EKG machine away, undoubtedly off to phone his friends with the news that, dude, this guy is full of like, lymphocytes.

The doctor was about my age, white-coated, with reddish hair and a pleasant manner that did not diminish with the news. Yes, she said, it appeared that I did have leukemia, and they needed to find out what kind I had. If it was an acute case, I would need to go to a hospital immediately (I was at our small town’s medical center, which is affiliated with larger hospitals in the area). If I had a chronic case, I could just go home.

My vertigo, she said, was probably “just” labrynthitis, an inner ear infection of unknown origin and for which there is no particular treatment.

“Is it caused by the leukemia?” I asked.

“Probably not,” she replied. And then she paused. “Well, I suppose it could be caused by one of the acute forms.”

Something spiked in me. Blood pressure? Stomach acid? Adrenalin?

My blood had been sent down the hall to the office of Dr. Lynn Lippencot, a hematologist/oncologist, which means a blood doctor/cancer doctor. She would look at it under a microscope and let us know what kind of leukemia I had. If the blood was full of tiny blast cells, it would mean acute. If it was full of larger but immature lymphocytes, it would mean chronic. It would take ten minutes or so to find out. The ER doctor went back to her other duties, leaving the curtains open.

Marilyn and I tried to hold a conversation about the merits of, worst case scenario, having to go to Hospital A or Hospital B. Tears ran down her cheeks. The real conversation, the one we didn’t need words for, went like this:

I love you and I am so sorry.

I love you, too.

We held hands in silence, and we waited. And waited.

The "good news"

We could see the doctor from our cubicle, sitting at the nurses’ station when the call came in. “Excellent!” she yelled, punching the air with her pen. She came back into the room.

“You appear to have chronic” -- she stumbled over the next word – “lymphat – lympha -- lymph-o-cytic leukemia

“This is good news, in a way,” she went on. “It’s the best leukemia to have. It’s very slow-moving, and most people die with it, not because of it. In fact,” she added a little sheepishly, “some people call it a good cancer.”

Marilyn and I squeezed hands again. I would be going home. And it looked like I might not be dead next week.

The doctor went on to tell me that CLL was something I could live with without much trouble, and that they even had a doctor on the staff who had it.

She felt the lymph nodes in my neck -- “yes, I can see they’re enlarged” -- and reported that the X-rays done earlier showed that my spleen was a little swollen.

“Don’t worry,” she said cheerily. “You can always have your spleen or your lymph nodes taken out.”

The doctor breezed off to process my discharge papers as I got dressed. On my way out she handed me a prescription for more Phenergan and relayed the message that Dr. Lippencot wanted me to set up an appointment.

But there was one thing I couldn’t get out of my head:

The best leukemia? A good cancer?

I remember thinking, as I left the ER with my wastebasket in tow, that the day had become every bit as surreal as my dream.