Tag: cancer

Cosmogony

~ sehaldorson ~ 2 Comments

To see him lying there, bloated and nearly naked due to feverishness, tubes like exterior veins protruding out of his neck in a knot of grotesque jewelry, a patch of dark blood–had it gushed?–spread out and dried on his chest, a thrum thrust through my torso like when a plane breaks the sound barrier. He turned to me when I arrived, when I said, “Wow,” careful to keep a certain amount of lightness in my voice, like when you slip on the ice and fall hard but assure everyone concerned that you’re just fine, and he said, “I’m sorry, honey.”

I think at that point he probably knew it was bad since the machine those tubes attached him to was removing his blood, cleaning it, and returning it, in an effort to quickly reduce the number of white blood cells which had been replicating unchecked in his blood. A science teacher, a teacher of biology and chemistry, certainly he knew. But he is also a pragmatist with a healthy shot of optimism. In other words, he’ll face what he has to face, but he won’t think the worst until it’s absolutely proven to be happening. Then it’s a matter of science; luck hasn’t much to do with it.

The women from the blood center who worked the machine, who showed me the bags of his blood, both red and white, mentioned chemo to one another. I didn’t let on that I’d heard, but soon I went out into the hallway to find the hematologist and suggested they make an effort to talk to him about the chemo since he had not been told directly that he had anything that necessitated such treatment. I said all this without so much as a crack in my voice. She was unwilling to commit, to declare it was cancer, to say more than that they suspected a form of leukemia, because the lab results weren’t in yet. But she promised to have the resident stop by and explain what they’d learned as soon as she could track him down.

I went to his bedside, and asked if they’d told him they were going to start chemo, that it was likely leukemia. He said no. He stared up at the ceiling. Tears pooled in his eyes. And then they were gone. I told his parents when they arrived–they drove from Minnesota on a feeling that things were not all they appeared to be, parents who had already lost a son to cancer–, that it was likely leukemia. His mother shook her head, said it might not be, that the tests might reveal a less devastating diagnosis, but I was sure, just as I’d known there was something wrong with our son’s development before anyone else believed it could be true.

The resident explained to us what Acute Myeloid Leukemia was. He used simple pictures on a white board to illustrate what had happened in Mark’s body before we could know it was happening. My memory of these moments is solid–I see the room, his rough sketches, and hear the resident’s voice, a reassuring Indian sing-song, clearly–but I’ve turned the information around in my head so many times, trying to apply some sort of logic to the incredible, that I’m afraid each time I speak that I’m repeating some laughable interpretation of the facts like a game of telephone.

As I understand it, a chromosome went wrong and one rogue cell started birthing premature white blood cells which then replicated more premature white blood cells, ad infinitum, driving the platelets and red blood cells out of the neighborhood that was his bone marrow. And because immature cells can’t do the work that mature blood cells can, his immune system was an inadequate barrier against any kind of illness. The cause is a gene mutation, a mutinous enzyme, a scratch on the record, that caused his cellular production to go awry. If left untreated, the immature white blood cells would proliferate until he is dead. Because this new chromosomal error is uneditable, they must clean out his bone marrow and replace it with another person’s.

Some leukemia survivors regard their bone marrow transplant to be a rebirth. They take pictures of themselves celebrating their new birthday. Some report changes in their bodies–gluten intolerance, overly-sensitive skin, a lingering fatigue. Some make vague references to not feeling quite themselves. But I can’t help but fear, in a kind of wondrous disbelief that the best science fiction engenders, that the man I married, whom I have lived with for the past 20 years, will not, at the end of this odyssey, be the same. Is this the ultimate test of nature versus nurture? Creationism versus evolution?

Our son’s neurological disorder is undiagnosed. The closest we get is to say he has a seizure disorder, but there is no answer to the question: why him? There is no cause determined, no prognosis predicted. The geneticists and the neurologists and the epileptologists and the other specialists have looked at his test results, the scans of his brain, the vials of blood and spinal fluid, the space between his eyes, the shape of his fingernails, and found nothing to explain why he is as delayed as he is. Is he–are we?—just unlucky? Perhaps the world would be a friendlier place for him and for me if we had an explanation for the idiopathic symptoms that plague his development and his safety. Maybe we could put the questions to rest–Is it something I did?–but then what good has that done us in Mark’s case? Leukemia is something that makes sense to doctors; it is an affliction that has a rote protocol. But it doesn’t mean we don’t ask the same questions: why him? why us? what happened?

Life strikes. Bang. Mark’s cancer was like a car crash without the car. One day he was home, then the next he was beginning a month in the hospital, the start of a six month process toward getting cured, and maybe a two year process to become himself again. And yet, I took it in stride. Maybe it was shock. Maybe it was the Zoloft I’d been taking for a few years since my anxiety over my son’s health and special needs had turned into constant high wire walking. Maybe it was our son’s recent 3-week hospitalization over the previous Christmas and New Years that had prepared me for another long haul, another effort in compartmentalization, the practice of segmenting my strife from my life.

Because that’s what you do when you abruptly–is there any other way?–learn that your husband has cancer and treatment begins even before either of you has time to prepare. There was no choosing, no strategy, no warning that I would suddenly become a single parent of our special needs child, the primary money-earner, as well as the grateful, if begrudging, hostess to the constant stream of family members and friends and child caregivers and dog walkers and house cleaners who offered their assistance. Every one of the 25 days he was in the hospital, I kept it together. The gun had gone off, the race had begun, the ground moved beneath us, and we had no choice but to run, a marathon and a sprint both. Exertion and fear of stopping forward movement drove every decision, every action.

Most people picture The Big Bang as just that, a big bang. Like a spark and a flame that suddenly brought the universe into being. Energy makes sense. Flipping the lightswitch makes sense. But if the universe truly began not from a bang, but from intense pressure that literally pressed the world into being, then how? I suppose it’s why we look to God; the answers are so minor compared to the wonders of the world, the wonders of blood, the white and the red. One day, long before we knew Mark had cancer, something happened and suddenly? He had cancer.

And maybe there are times in a person’s life that are so combustible that you are fused into another version of yourself. My husband may earn a new life by accepting life from another person, but perhaps he already is becoming someone else. Perhaps it doesn’t take blood to renew the spirit. And perhaps it doesn’t take God either. Perhaps the extreme pressure he is under will change him regardless of the transplant, of the noncancerous cells recreating in his body minutes, days, weeks, and months after. And perhaps the same is true for myself. I wonder, after so much pressure, how much of my previous self is still there? How much of me is memory? And, maybe I wonder, how many times can a person be recreated before the pressure becomes smothering and the light just dies out.

What I Saw

~ sehaldorson ~ Leave a comment

This morning, the hoary light in the guest room where my husband now sleeps frosts him with a silver shadow, turns his spare body hair white, his head hair, once dark, a willow’s worth, to fuzz on felt. I watch him rise from the edge of the bed, shuffle forward in baggy boxers, a basket of medications in both hands, held out like an offering, held out like the plates of food he hands back to me because he is too sick to eat. He looks ancient, a golem, still broad but bent shoulders narrow too narrowly, a street puppet wavering on stilts, bracing for the next blow, a marionette whose master is cancer.

Moments of Impact

~ sehaldorson ~ 2 Comments

After Hiroshima dead bodies were found of people who had been wearing printed kimonos when they were killed. The bomb had melted the cloth on their bodies, but the design on the kimonos remained imprinted in the flesh. It seems to me in later years the deep nerveless passivity of that time together had become the design burned into my skin while the cloth of my own experience melted away.

Vivian Gornick, Fierce Attachments

Some say they remember where they were, what they were doing, when Kennedy was shot. Of course that means they remember where they were and what they were doing when they first heard Kennedy was shot. Some say the same about Lennon. I seem to recall being at Clayton and Maxine’s house, friends of my parents, staying over because my parents were out of town, when Elvis died. I can’t be sure it was Elvis, but I’m pretty sure it was. And I don’t think I remember that moment because I was any particular kind of Elvis fan, but instead because I didn’t understand why this was a big deal. To me, Elvis was only the Elvis of the sparkly white jumpsuits and ridiculous dark glasses; I didn’t understand Elvis as a cultural phenomenon. I didn’t understand that Elvis had changed everything for an entire generation. But my parents’ friends were struck, and I thought I should be too. It was the dissonance of the experience that makes me remember that moment.

I remember being in the band room of my high school when I first heard about the Challenger blowing up in the sky. Perhaps I only remember it because Sally Ride was another Sally, but I think that I remember it because I felt staggered by the realization that the brave were sometimes the least safe.

When OJ took his white SUV on the run, we crowded around a small television set usually reserved for important sports events at the insurance brokerage firm where I temped. At work, where I made copies of documents and then filed those copies, OJ was water-cooler fodder and a spectacle that brought us together for days, weeks, months, with the denouement so deflating it seemed to diminish just how new and bizarre it was to watch news happen in real time.

I had just walked into the gym the morning of 9/11. Instead of running on treadmills, or stepping on ellipticals, or hefting and dropping weights, the people in the gym that morning were standing still and staring up in silence at the silent televisions broadcasting a tower’s collapse. Rebroadcasting the moments of impact. At first, I thought it was a movie. I thought soon Will Smith or Bruce Willis would appear.

Why I remember those events from the past is anyone’s guess. Some events are so dramatic, the impact clears the every day clutter from your head and stamps itself like a brand on your memory. Other events just joins the messy brigade of thoughts marching and encamping throughout the day, denying those moments the time to take root in the soil of memory. I can’t tell you what I was doing when I first heard that Katrina hit New Orleans, when the earthquake hit Haiti, or a defective reactor poisoned the people of Chernobyl, Japan or Three Mile Island.

Seemingly solid memories bleed and reshape like oil drops in water. Tip your brain one way and the memory will elongate; close your eyes and you can drop yourself down in the moment, but it’s a bit like Marty McFly or Quantum Leap: so little control once you project yourself there. When I picture myself in the band room, in the brokerage firm office, in the gym, I don’t move and I don’t react. I only see. Maybe because if I move, I will affect history like any good sci-fi movies warns of, or I will cause the memory to shift and it will never regain its former shape, or I will peer too hard and the clearly drawn edges of the memory will become amorphous and I’ll begin to doubt everything I once thought I knew.

My mother often told the story of announcing to my father they had been approved for an adoption and would be receiving a baby, my brother, by posting the news on the red brick silo just behind our garage. When I think on this now, I simply cannot believe it. How my mother would have posted a sign that big that high-up defies any kind of logic. She would have needed a lift truck to do the deed, but in my mind, that memory of her memory persists.

I was in Mr. Buck’s 7th grade English class when someone came to the door to pull from class and tell me my mother had died. I remember it being our pastor at the door. I would imagine he had been brought there by our principal but I can’t remember him there in the moment. I think we sat in the principal’s office because somewhere in the school my father waited for me after the telling, but I’m not sure. My mind’s eye can’t see the room, can’t remember the first hug. I do remember sitting on my father’s lap in the front seat of the pastor’s car–nicer than any of ours, I know–as he drove us home, leaving my brother at the high school as he was unwilling, my brother, to let the news impact his regular day.

I can’t remember how I learned that my father had died. Maybe my brother and I were exchanging phone calls? Maybe someone from the hospital called me? How can I not remember that? But I do remember coming home (from the gym? from a tennis match?) and listening to a message on my answering machine (from my aunt? or my uncle? a message from either would have been strange as I hadn’t spoken to either of them in at least a decade) telling me my father had been taken to the hospital via ambulance. I know he lived, in a coma, a few more days. I know I didn’t travel to Minnesota to see him. I don’t remember why not going seemed the best option.

Other news also came on like a slow burn of a ditch fire, carefully watched, but somehow still wild. My son’s disabilities revealed themselves like drips into a bucket that fills surprisingly fast and overflows with a gush. By his first birthday we knew that he was not the child we’d dreamed of having. For the next three years I would fight against that reality, trying futilely to cup the water in my hands and put it back into the full bucket.

My husband’s leukemia took months to diagnose. There was always something else it could be. It was exhaustion; it was cluster headaches; it was a virus. The other possibilities were ludicrous as few suspect cancer in an otherwise healthy, downright robust 48 year old man, despite most of us worrying ourselves over cancer every day. Leukemia. Blood cancer. White blood cells gone rogue.

And maybe because it was just months ago, but I remember the moments with calm clarity. I remember sitting at home, thinking it could be leukemia. I remember telling myself that the most devastating thing is often the least likely. He texted me that they were doing blood dialysis to reduce the number of white blood cells because he had far, far too many. But no, he said, he didn’t know what that meant. It took me a couple of hours to get to the hospital. I knew he was sick, that he had been sick, that he hadn’t been who he usually was for many months. But I didn’t expect to see him stripped and bloated on the table, multiple tubes like computer cables running to a churning machine from a port in his neck, his skin blotched around the injection site with stains of dry brick red blood. Each of the tubes were removing blood from his body, pulling his blood into the machine, separating and hoarding the white while returning the red. I stopped dead at the doorway. He turned to me, knew what I was seeing, and said, “I’m sorry, honey.”

And I think that was the moment we both knew. Even before the technician from the blood center let the word chemotherapy drop from her mouth, before any doctor had warned us of the possibility, or rather, the necessity of treating his cancer immediately, no choice in the matter. The gravity of his words, “I’m sorry,” crushing the hope that anything from this point on would be easy. No, what had already been hard would now become harder. The load would be heavier and the direction of our life together less clear.

The word cancer makes people think of death. So does leukemia, though there are many stories we hear about people who have been cured with much hard work, by the doctors, by the sick. My husband has always been a strong man, a hard worker who has defined himself to himself by putting hand to the proverbial plow. He is two months into what will be the two years of the hardest work he will ever have to do. I choose to believe his body can withstand the impact of the blows. I choose to believe that his will can insure the result. I can only hope my heart’s scars have formed a strong enough infrastructure beneath the minute fractures to keep me from crumbling from each upcoming strike.