A Numbers Game

In the life I had before my blood cells mutated, I worked an average of 12 hours a day, 6 days a week, for almost 1 year at a dive bar in Iowa, where I lived in a cheap apartment with a roommate, where I could make my ½ of the rent during just 1 busy karaoke Saturday. I bought almost nothing and sold almost everything, even my toaster, because bread is better when it’s soft anyway, and what use did I have for such a luxury item? I saved as much as I could to travel, and I did, for many months in Latin America. While I traveled, I bartended at hostels in exchange for 1 free bed in dorm rooms that slept 16 or more, and I ghostwrote for various blogs on buses and in internet cafes on bad-weather days. 1 blog, a funeral planning blog, commissioned me to write 1,000s of words on how to save money on burials, the cost difference between burials and cremations, what gifts are appropriate to give the bereaved.  Lilies are appropriate, for example, but roses are not; death has decorum. I asked for a break after writing 2,000 words on how to clothe infants for burial. “This was a bit much for me,” I explained in an email. My client told me that he understood, but that “pretending young people don’t die doesn’t stop them from doing it.” Now that I feel like I may die, I spend many hours dwelling on the logistics of it, the cost it will be to my family to dispose of my body, the words I’ve written about death without ever considering it something that could be happening to me.

I don’t like the idea of burial, of rotting in a field surrounded by bones, of being left for maggots. I cannot stop thinking of maggots. Sometimes my dreams have maggots in them.

Cremation seems better. I don’t want my ashes left on a shelf, but maybe scattered somewhere, somewhere beautiful I never got to visit as a living person. My dreams are on fire. I wake with the smell of burning in my nose.

I write a will in the hospital. There’s so little I’ll leave behind. Not even a toaster.  

…

Illness involves the understanding of numbers. How many white blood cells should a body have, for example, or how many 100,000 of platelets there are in healthy blood, or how many people with a certain condition survive it, and for how many years.

I was diagnosed with acute myeloid leukemia at the end of April 2023. My oncologists declared me in a remission 5 months later, after 3 rounds of chemotherapy. Here is another thing I’ve learned: remission is not the relief I thought it was, is a life raft in the ocean. A blessing, a prolonging, but it is not land. There is still the possibility of drowning.

The likelihood of relapse is 50% within the 1st 5 years of remission.

I achieve remission at the end of September, and a countdown begins.

…

I am young and otherwise healthy. My medical team reminds me of this almost daily, as if I’ll somehow forget how young I am, that I am a 25-year-old with an old person’s cancer. I should be able to survive this if I am tenacious and tough enough. Leukemia is not the death sentence it was 10 years ago. It may not kill me.

Not right away, at least. I might be 1 of the lucky 1s.

My yearning for a long, or average length (79 years for a woman in the United States) life feels like a living thing lodged in my throat. It stretches up towards my mouth, towards the sunlight. I am sick with want. I am extremely sick.

After they give me medications in tiny plastic cups, for which my parents’ insurance will be charged 100s if not 1000s of dollars, the nurses ask me if I am in any pain, and if so, how much? Can I rate it on a scale from 1 to 10? I never know what to say. There is pain, but I can endure it. How to adjust for the capacity to endure? I am always hurting, but not in the way they’re asking about. Are hurt and pain the same? Are the scales the same, from 1 to 10?

…

The way I measure time changes. Days are things to endure; to get through. There is a Before and an After. Treatments mark a passage.

Between rounds 2 and 3, my brother and his wife announce that they’re expecting a baby. I want so fiercely to see their kid grow up that I feel it as a physical ache, I feel it like squeezing, I feel everything so much and for how much longer? If the chemotherapy does not kill the right cells without killing me, I will not get to exist in this child’s life. I will be a figure my nephew only recognizes in pictures, a name he knows, but a stranger. I may not get to become the aunt I want to be. What else do I want to become that I haven’t yet? Maybe a wife, someday. Trilingual. A better skier. More of a cyclist. A better friend. Patient. Middle-aged. Old. Perhaps 79 years old, if I want to be greedy, which I do.

Is it greed? I want to die how I feel most people want to die—peacefully, having lived a full life, more than just 25 years of it. We do not get to choose how we go, but I never thought that this was too much to ask for. It seemed so normal, such a reasonable request, like asking for more salt at a restaurant once the shaker’s run out. I’ve always believed that we are allowed to ask for more.

…

“You’ll probably experience some stages of grief,” a nurse practitioner said on 1 of my 1st days of being a cancer patient. “We have resources available if you start feeling depressed, anxious, or start experiencing suicidal thoughts.”

There are 5 stages of grief: denial, anger, bargaining, depression, acceptance.

My denial was plentiful, but inconsequential, especially with the tangible things. The chemo dripped into my body 24 hours a day though a central catheter in my arm no matter how fervently I believed none of it could be true.

My anger is consuming. I am swallowed up.

I do no bargaining. I don’t know who to bargain with. I have nothing to give.

Depression, of course.

Acceptance, quietly.

…

My grandfather had leukemia when he died 12 years ago. I don’t remember much about that time, except that he looked so frail, so much like a stereotypical sick person with waxy skin and an IV in his arm and bagged blood snaking its way into his veins nearly constantly. “Cancer” was a whispered word.

We do not share any DNA, my grandfather and me. He was not my mother’s biological father, though he was her father in every other way. My leukemia is not an inherited thing, but it is now something we share. I wonder if we have bruises in the same places, the same scarred pelvic bone from biopsies (5 for me, so far), the same weary heart. I wish I could tell him that I understand there is only so much 1 can do when cells start to mutate. I wish I could hear him say it back, so maybe I’d believe it.

“It wasn’t really the leukemia that killed him, you know,” my mother says when I mention him.

“What?”

“He got pneumonia. That’s what killed him.”

“But if he didn’t have leukemia, his body could’ve fought off the pneumonia,” I say.

She is quiet. Then, resolutely, “It wasn’t leukemia.”

…

I have so many dreams. There is 1 I have often, sometimes 3 times in 1 night, in which my oncologists have decided that the only way to get rid of the cancer is to drain my body of blood completely. They jab a needle in my arm and start pulling out syringes of blood until I grow pale and shaky, and my skin starts to shrivel, raisin-like. “You can’t take it all,” I say to the doctor.

“We have to,” he says. The syringe in his hand reddens. “It’s all bad. It’s killing you.”

The thing about blood cancer is that there is no part of the body that blood doesn’t reach. There is nowhere the cancer does not touch. The thing that may kill me cannot be removed.

…

I can keep doing this. I can keep being stuck with needles and yanking massive blood clots out of my throat and shaking with fevers and gasping for air after walking just 10 steps and pulling chunks of hair out of my scalp and sitting in the shower because it is too exhausting to stand and run a washcloth over my body at the same time. I can do all of this if it means I get to live. However, I may do all of this for the cancer to just kill me anyway.

After round 3, I am hospitalized with a fever. It was, truthfully, the 3^rd fever I’d had in as many days, but the 1^st I told any1 about because I knew I’d be hospitalized. During the 1^st 2, I shook in my bed in the guest room at my parents’ house, mine during this time of sickness, and wondered if I would die. I wondered who would find my body. “I wish I didn’t tell any1,” I admit to my brother and sister-in-law on day 4 in the hospital.

“You know that could kill you, right?” she says. I shrug.

“Is that what you want?” he asks.

“I don’t want to die, but…”

They tug their gazes from the floor to look at me.

“But there is a part of me that wishes, if this is going to kill me, that it would happen now.”

If all of this is for nothing, is it cowardly to want it to end now instead of later? How much extra time justifies how much suffering? It is a numbers game I play with myself—how many months of treatments for 1 extra year of life? 2? Will I go through with a bone marrow transplant if I get 3 years? Is there a point when the time gained isn’t enough, and how will I know when that scale tips?

…

People send 100s of supportive messages. They say “You’re a fighter,” and “Keep staying positive,” and “You got this.” Sometimes, I wish they’d say “It’s okay if you don’t beat this,” or “Sometimes fighters die,” and “This isn’t up to you. If you die, it’s not your fault.” Really, just “It’s not your fault,” would do.

I worry that people will say I wasn’t strong enough if I die, that I didn’t fight hard enough.

I am doing everything I can. I want to live, but I cannot force my bone marrow to start working again. I cannot stop my cells from mutating. I cannot make the numbers on my blood reports to be the right 1s.

If I die, do not say that I lost my battle. Do not make this about winning or losing. The last thing I will ever do is die, not lose.

There is comfort there, that the last thing I will ever do is die, same as every1 else, even if it isn’t soon and isn’t from this.

…

Last year, my mother’s brother got esophageal cancer and died just 3 months later. He became listless and emaciated and discolored so quickly it was distressing not only because we loved him, but also because it didn’t seem right that a human being could deteriorate so fast. He was a quiet person when he was alive, and I didn’t know until after he died that he drove racecars. I love this about him, that even though he seemed timid and slow-moving, he loved nothing more than going as fast as he could around a racetrack 100s of times in a cool car.

Shortly after, my father’s brother shot himself in the basement of the Nebraska home he shared with his mother. I was in Bolivia at the time and didn’t have service for 4 days, and by the time I got the 17 messages from my mother and my siblings, they’d already had the basement cleaned (another expense of dying, if you make a mess that needs cleaning) and put the house on the market and had the funeral. He was on Jeopardy once. He didn’t win.

Last Christmas, we lit candles in their honor, and 2 more for my dead grandpas. My uncles were too young to die; they should’ve had more time. 1 could’ve driven more racecars and the other could’ve been on another game show. He could’ve won.

I don’t think my family could take 1 more candle at Christmas. I don’t think I could handle the loss of everything I could’ve done; the undriven laps and unanswered questions.

…

I’m beginning to think of living as something I must prove myself worthy of. I am wife to no 1, mother to no 1. I haven’t accomplished anything that consequential or made any large difference. Does that make me less worthy of saving? Is the potential of what I might still do and become and who I might love and who might love me enough to justify the 1000s of hours and 1,000,000s of dollars being put into keeping me alive? Do people who are given 2^nd chances have to be inspirational? Is it okay if I live an unextraordinary life? Can I just…be, after this? Can I simply be well?

…

How small is the number of years I have left? Do I have 2 digits or 1?

The chances of relapse drop after 5 years of successful remission, and those who make it through this time are considered “cured.” I fixate on the age I’ll be then; another number: 30.

There is no guarantee that the cancer won’t come back after I’m 30, and life makes no guarantees at all. Every day something terrible could happen that could kill me. Still, I cannot stop thinking of 5 years in remission. I don’t think I’ll feel any kind of peace again until I reach 30, and maybe not even then.

Thirty, thirty, thirty. Such a tiny number, really.

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