Fear’s Tango
Hope and fear are unlikely partners in the ritualistic dance of recurrence testing.

By Skip Kaltenheuser

It’s approaching again, albeit with lessening dread, and reduced from three- to six-month intervals. I’m confident Jack, who turned 6 in August and is now best described as Dennis the Menace on steroids, will continue to beat the averages and ace his MRI, his odds against recurrence of his brain tumor improving with each successful passage through the giant magnet’s chamber.

But I can feel the molasses pouring into the gears of this writer’s head. I know that for the prior week or so no real work will be done at a desk. Once an uncooperative Jack is anesthetized during the MRI procedure at Children’s National in Washington, D.C., I usually kill the suddenly bottomless hour by giving blood to a hospital I’ve come to revere. It’s a ritualistic defiance that my mind’s eye sees enhancing Jack’s karma, like the foot rubs after he falls to sleep and the little whisper: “You’re OK, Jack. It won’t be back.”

As my blood flows out, singed fragments of memory flow in, little posttraumatic sparks of a 1-year-old boy with a disappearing smile: His running down the Kennedy Center foyer during an Irish fiddler’s concert, a run less of joy than like something was chasing him. Jack’s arrested speech, the hearing tests, weeks of sleepless nights on the floor next to a crib in the living room to walk him back to sleep, or try to, so the rest of the household could sleep. Jack’s sudden sitting up in the dark, staring at nothing. His decreasing eye contact.

I recall accepting something was terribly wrong as a television in the background showed a sci-fi film of malignant creatures devouring starship troopers. The HMO’s distant scheduling of an EEG weeks away, the frantic insistence by my wife and I that Jack be examined NOW as little tremors crescendo into seizures and upchucking after each meal. The CAT scan’s revelation of the terrorist in the front left lobe, a black hole the size of a golf ball sucking away parents’ dreams. The midnight ambulance ride to the hospital, following behind in a car alone, yelling deals at an uncertain heaven. The tearbursts in empty hospital halls. The 45 minutes of sleep and the mind’s fight to keep the nightmare from waking reality. No more tears left, hugging the limp little boy before he entered that first MRI. Utter despair, how to raise the issue of organ donation, the shame of giving up.

Sand flowed back into my legs with the surgeon’s matter-of-fact statement: “I think I can get most of this thing. We’ll see what it is and where we go from here.”

The surgical wizard cut as much as he could without risking partial paralysis. Weeks were spent feigning sleep next to Jack in the hospital, listening to noisy monitors, to other patients who came and went. My life was timed to doctors’ rounds, to keeping Jack from pulling off wires and yanking drips from sore wrists, to the parade of antiseizure meds.

Home at last, then complications as a clogged brain drain turned him into an Outer Limits extra. The midnight runs to the emergency room, holding Jack while the doctor used a syringe like a turkey baster to pull the liquid from his swollen head. The concerned faces on his mother, sister and grandmothers as FrankenJack kept returning. One last try, please, to avoid the medical adventure of a shunt. Finally, success with a head wrap that opened the drain. Then sleepless months of pouring various antiseizure drugs down the hatch of an unhappy camper every few hours.

The news is grand, the plasticity of Jack’s young brain impressive. Though his speech center was wiped out, he’s suddenly a magpie. A unique and loving, if mischievous, personality emerges as Pinnochio turns into a real boy. Therapists move him along, warding off autism. There are still fences to leap, but Jack’s leaping. He beat back the remnants of his unpredictable grade of tumor without chemo.

Hope never wavers, but holding the fear at bay as it taps my shoulder is an art form of repression. Chills went through me at a 30th high school reunion when I spent time with an old pal, a brilliant scholar, who was losing to the same type of tumor, though of a more predictably lethal grade. As we talked, my heart saddened for what I knew he was going through. In my mind, I constantly went over the differences in grades, of odds.

When Jack was in the hospital, I rode a hospital elevator down with a young mother taking her son home in a wheelchair, his gaze unfocused. I knew from her father-in-law that the boy had lost to his brain tumor; he only had a few days to live. I struggled during the short ride to say something that wouldn’t put her on the spot during a moment she might wish to keep private. It was early spring and suddenly warm with flowers coming out. The best I could manage was that it was a pretty day to go home. That elevator still haunts.

I heard a mother sobbing in her little girl’s hospital room after learning her daughter had to undergo yet another operation after a number of procedures failed to block recurrence. I wondered if I could muster the necessary strength if the bottom dropped out again. There are no fears like those over which one has no control. One accepts there is no comprehensive insurance in life and starts knocking wood. I buck up when I read of any medical advance.

To function, I pushed my fear down so hard I missed the emotion. I started yearning for fear’s embrace, for a solid, identifiable fright that I could personally grapple with. I seized an opportunity while covering a trade show in Acapulco, a first bungee dive. It did not disappoint.

A broken tower elevator necessitated a long, riveting climb up ladders. An unusually straight-out dive angle twanged me back from the beach over a couple lanes of traffic and toward a building as the cord went slack and curled. I was sure my name would forever be associated with the term “freak accident.” But the cord returned me to my intended trajectory.

At a reception afterward, no margarita could quell my still pumping adrenaline. A fear that could actually seize my ankles was a wonderful catharsis for the rougher fears one imagines.