Homer says there is an actual formula Western countries use. They will spend up to $100,000 to prolong your life for a year. On that calculation, a $500,000 stem cell transplant is a good deal, because the expectation is that it will give me, not just five years, but the rest of my natural life.
I’m constantly calculating in my mind, shuffling the years, the odds. I’m forty-seven now. If I can live for fourteen more years that would take me to sixty-one, which I believe is the earliest date at which I can retire with a reduced pension. That’s important, because then Simon and the children will be financially secure. Fourteen years mean Jack and Anna will be twenty-five, which isn’t bad. They’ll be finished university by then.
“Don’t you ever think about you dying?” I ask Simon.
“Only when you bring it up,” he says.
I’ve never been to Las Vegas, never gambled anywhere, but I keep thinking of my future as something someone is offering me as a bet. Would I take fourteen years, if it were offered to me right now, as a sure thing? Absolutely, I would. But then, when I’m feeling energetic and have had a good doctor’s appointment, I wonder, would that be selling myself short? What if I would have lived twenty more years otherwise? Twenty-three years would take me to seventy. Jack and Anna would be thirty-four years old. They could be married, and even have children by then. Imagine, I could dance at their weddings, maybe even officiate at them. I could hold a grandchild, maybe even babysit one.
I mention this in passing to my family doctor when I see her next, and she says, “Twenty years? Why only twenty years? Shoot for thirty!”
I am taken aback at the very thought. I hadn’t dared to go there. Thirty years would take me to seventy-seven. Thirty-five years would take me to eighty-two, which is pretty much the life expectancy for a healthy woman my age in Canada. I read about seventy-year-olds going for heroic treatments, searching for organ donors, and I think, really? I would take seventy on a silver platter right now. I don’t know why I always picture it like that, on a silver platter, like a lavishly presented gift. Maybe because it’s something I would take gratefully, without uttering a word of wistful complaint. It’s the certainty I crave, more than the actual number, when I picture making that deal, with whoever it is that is authorized to make deals like these. I would sign over a potentially longer life in exchange for the certainty of a set number of years. In my low moments, I think, Hell, I’d take five good years (on a silver platter).
I’m busily firing off all these numbers at Simon one day, as if they were just that, numbers, when I notice he has tears in his eyes. I’m so consumed by the numbers and the calculations that I’ve lost sight of what they represent. It’s like I’ve traveled so far from reality, I can only think about it clinically, not realizing that after the five years, or ten years, that I’m willing to make a deal for, I’ll be gone. Simon won’t have a wife. Jack and Anna won’t have a mother. It’s a loss I’m trying to guess the start of, not realizing that when it starts, it doesn’t end. My life might have a tidy number of years left, but my absence will go on for the rest of their lives. My voice trails off.
Stop talking, I think. You’re so selfish. Are you happy now? You’ve finally made Simon cry. No one is waiting to make a deal with you. This is not a game show. Who am I kidding anyway? TV and radio game shows (like Beat the Bank) always make me so tense. Should the contestants keep what they have, or risk it all and go for something more? They might end up with nothing. It’s only money, and not even mine, just some stranger’s on the radio, and I still can’t handle the stress and the disappointment, the clanging bell of the empty vault. It’s a good thing I’m not asked to play it for real with my actual life.
Chapter Twenty
“Wow, this is amazing!” my friend Nancy gushes. She’s popped in on her way to work, at a law firm a block away from Princess Margaret Hospital. “What an improvement!” She starts lining my windowsill with box after box of designer skin care products over my protests that she doesn’t have to bring gifts every time she visits. Her own skin is perfect.
I have a private room this time; in fact, it’s more like a suite, with a private shower and even a small annex with my own exercise bike. My door is heavy and blocks all noise from the hall. Not only do I not have a roommate, two days go by before I lay eyes on a single other patient. Even the nurses’ station is quiet, no bustle or intercom announcements. The only IV alarm I ever hear is my own, and when it beeps and I press for a nurse, one arrives instantly. There is no waiting for nurses here.
The kitchen in the ward has a fridge full of treats for the patients: Coke, ginger ale, ice cream. Even Popsicles, banana Popsicles. Right in the ward.
Things must really be serious now.
The door is heavy, not to block noise, but to block germs. Whenever I open it, the special ventilation system creates a negative pressure so that air cannot travel from the room into the hallway, minimizing the spread of infection.
The reason I have my own full bathroom is so I can shower the required four times a day, because the chemo I’ll receive makes your perspiration toxic. It causes skin rashes unless it’s constantly washed away.
Every patient is secluded and even the kitchen is locked. You can access it only through a nurse because of fears of infection. There are complicated rules about bringing food from home and where it’s allowed to go. They go over it umpteen times but my mother and I still have no idea which part is forbidden. Is it that food from outside has to go straight to the kitchen and can’t go to my room first, or is it the other way around?
The windows to the left of my bed face west over the city. I look out on the row of shabby Victorian houses along McCaul Street. I can just make out the first couple of restaurants on Baldwin Street. I can see the University of Toronto, and depending on how I position my chair, I can even see part of Lake Ontario. To pass the time, my mother gazes out the window and gives me a running commentary.
“Oh, it’s starting to rain,” she announces, when the umbrellas come out. “I never see anyone come in or out of those houses,” she adds. “Who lives there?”
I cannot summon up the curiosity to care. The people on the street seem irrelevant to me. I feel as far away from them as the stars are from me. They’re going to work, to school, to restaurants, out there in one of my favorite parts of the city; but my Toronto has been reduced to a single room. I feel so distant that I never close the blinds when I change. I feel that invisible. Sometimes I don’t even bother to close the blinds at bedtime, because the sun is that negligible November sun that makes the city seem grayer in daylight than at night. At least the night has contrast; it has edges; it is definite.
I will first get high-intensity doses of chemo and radiation, and then the transplant, on what is called Day Zero on the little highlighted calendar taped to the wall at the foot of my bed. I will be released once my white blood cell count reaches 0.5, which hopefully will be by the end of November, or specifically, Day 25. I stare at the calendar night and day, willing the days to pass.
The ward is so quiet, I hear only the white noise of the air ventilation system, which is loud but unspecific, so I soon don’t hear it at all. It muffles all conversation, and everything seems muted. There is only one sound, a low thrumming, and only one smell, a cross between a medicine and a cleaning product. It makes me queasy.
I was really worried when we first arrived because I threw up two times on the way to the hospital, making Simon pull over for an emergency stop by the side of the road. Not only was that embarrassing, but I thought I had caught some stomach bug on this most important of days. But when I first meet the specialist on the ward, he explains that it is a result of the pain from the Hickman line procedure. He orders some codeine for me and I feel better as soon as I take it.
“It hurts a lot more when they have to go in on the left side,” he explains, “because the veins are lower down, which means more probing.” He i
s tall and boyishly handsome and speaks in kind, measured tones. He is hugely popular with the patients and nurses alike. It makes me feel much better knowing the reason for the pain. He doesn’t act like he’s in a hurry to continue his rounds, so I ask about my other concerns.
“I was worried,” I tell him, “at my first appointment, when they said the transplant might not take. I got the impression, I guess, that…does that mean that’s the end?”
He shakes his head and smiles.
“We have a plan for that,” he says. “We purposely harvest more stem cells from the donor than we think we’ll need. So we can do a second transplant, if we need to.”
“What about graft-versus-host disease?” I keep going. “What do you do if that happens?”
“Graft-versus-host generally doesn’t occur until after discharge. That’s why, when you leave here, you’ll have to keep coming back in twice a week for about two months to get checked. It’s actually good to have some graft-versus-host effect. We infer from that that the new stem cells are strong. Because, if they’re attacking you, your organs, they’re probably also attacking any residual leukemia cells in your body.”
“I thought I was in remission!” I say, alarmed at the thought of “residual leukemia” lurking in my blood. He shakes his head.
“They never know if they got one hundred percent of the cancer cells. But we’ve found that patients who experience graft-versus-host disease have better long-term outcomes.”
When he expresses it as “outcomes,” it feels cool and detached, not like my life or my death, just different outcomes, and I do not have any inclination to weep, even at the new thought of leftover leukemia cells lurking in the hidden bends of my bloodstream.
The next day, though, I am down again, when he tells me I will have the Hickman line in my chest for six to nine months after my discharge, because I may continue to need it for blood transfusions. I do a quick count on my fingers and am devastated to find that this means I may miss a second summer of swimming. But I decide to keep those same fingers crossed. A cautiously optimistic average of seven months takes me to the end of June, so I may still get July and August in the water.
When I spellcheck my CaringBridge post about my swimming calculations, it highlights my first name as an error and suggests “minutiae” instead.
When my chemo finishes, I go down to the radiation department for two full-body radiation sessions: forty-five minutes in the morning and another forty-five minutes in the afternoon. Lining me up exactly takes almost as much time as the radiation sessions themselves. I have the marks inked on various parts of my body from the measurement session I had before my admission to hospital. But it still takes a long time for the technicians to be satisfied that everything lines up. They even tell me where to direct my gaze.
I am allowed to blink, but otherwise I have to remain perfectly still while the radio plays some indie rock station. Even though I know you can’t feel radiation, I imagine that I can. An invisible laser attack on my body, killing every last remaining bit of my immune system. I imagine being hollowed out and then filled with a stranger’s stem cells. Because you can’t see stem cells, they seem like nothing and like everything at the same time.
All through this ordeal, none of the medication has made me as nauseous as this radiation does (or perhaps it is the cumulative effect of all the treatment). Nausea and despair taste the same. I can’t tell which of the two I’m feeling. The day after the radiation, I throw up several times and am unable to eat anything. My nurse, who comes in later that evening with my sleeping pills, sees me lying in bed with tears streaming down my face.
“Are you crying because you miss your children?” she asks sympathetically. “You could Skype them.”
I try to smile. I don’t reveal to her that I’m not thinking about them at all. I’m crying just because I’m sick of being sick.
It is 2 p.m., October 28, 2014. Day Zero. The day I get my stem cell transfusion. More than 2,000 kilometers away, 150 teachers in Dallas, Texas, blow me a kiss. It’s at the request of my friend Peter, who is conducting a workshop at an educational conference there that same hour.
The afternoon I get the stem cells seems celebratory and buoyant. This is what I’ve been waiting for; this is the final step. I feel elated. My mother is there. Simon was there but has left because it’s time to get Jack and Anna from school. The nursing supervisor is there with all her paperwork, checking that everything is in order. She stays during the whole infusion, which doesn’t take long. It’s just another small bag I get by IV, seemingly no different from all the bags I’ve had before.
“It’s basically a battle of good versus evil.”
When I ask my friend Bharati, a geneticist, to explain my stem cell transplant to me, this is how she begins. This is more like it! I thought for sure she would tell me something I wouldn’t understand, but this I get. Not science, but a saga. My cancer cells are Death Eaters, waves of Orcs from Mordor, dragon teeth sown on fertile soil, multiplying Hydra heads. The stem cells are Harry Potter, Frodo and Elven armies, Greek gods, and Marvel Universe superheroes. But they don’t just do battle for your life, they are the first seed of your life itself, the magic bean that can grow not only into a giant beanstalk, but into anything.
You start life as a single stem cell. When one sperm fertilizes one egg, to create you, the first thing you are is one cell, and that cell is a stem cell.
Cells grow by dividing. So that first cell divides and becomes two, and then those two become four, and those four become eight, and so on. At some point, very early on, the stem cells get a signal that tells them what kind of cells to become: skin, liver, brain, lungs, etc. Once they get that signal to specialize, there is no turning back. Once a liver cell, always a liver cell. By the time you’re an adult, you have stem cells remaining in only three places: your bone marrow; your circulating blood; and your umbilical cord blood (if you happen to have banked it).
The job of the stem cells in your bone marrow is to make all your blood cells: the red blood cells, which carry oxygen to all the parts of your body; the platelets, which aid in clotting so you don’t bleed to death if you’re cut; and the white blood cells, which fight infection. Some of your body’s cells live for days, some longer; but none live forever, they are constantly dying and being replaced.
The way stem cells divide is different from the way other cells divide. One liver cell divides to become two liver cells, but a stem cell can divide to make a mother stem cell and a daughter stem cell. The daughter stem cell then gets a signal to become a particular type of blood cell: red, white, or platelet. But the mother stem cell can go on to divide into another mother and a daughter and so on. Thus they can replicate themselves and make blood cells at the same time. All the blood in your body is constantly passing through your bone marrow, which is how the new blood cells join the flow, and some stem cells are carried along for the ride. Your stem cells make 300 billion blood cells every day.
The quality control required to keep this all going is so mind boggling that instead of wondering why something went wrong for me, I’m actually wondering why something doesn’t go wrong every day, for every single person on earth.
The error is so tiny at first. Each white blood cell, like every cell in your body, contains twenty-three pairs of chromosomes, which is where all your genetic material is stored. Sometimes a bit of one chromosome will break off and join another chromosome, resulting in genes combining that don’t normally combine, causing a genetic mutation. Sometimes these mutations are harmless and the cell dies. And sometimes, like in my case, they are not.
In my leukemia, the particular pieces of chromosomes that broke off and recombined, 4 with 11, and 7 with 10, created a type of genetic mutation with superpowers. And their superpowers are so amazing I have to admire them, really: They are harder to kill than my other white blood cells, resistant even to most types of chemotherapy;
they replicate faster; and they survive longer. I’d been wondering why they would be so foolish as to kill their host, but there is nothing to wonder at, because it doesn’t happen immediately, it happens generations of cells later. And just like humans devouring the earth, they don’t care about that distant future.
As for my other white blood cells, whose job is to fight invaders, were they asleep at the switch? Did they fail me in some way? To be fair, it wasn’t really their fault. They couldn’t recognize the invaders at first, because they came from within, camouflaged as friends, so they weren’t identified as enemies. When my white blood cells finally did recognize them, it was too late. They were outnumbered.
So, in an attempt to save me, they had to be sacrificed and replaced by a donor’s stem cells. A donor’s stem cells have two big things going for them: They are a close match, but not an exact match, which means they will be able to recognize the invaders, which my cells could not; and they are stronger than my own stem cells were.
The donor is anonymous, but I try to pick up clues about who he or she might be. I get the impression that the bag is not frozen, but fresh, which makes me speculate that this could mean it was from somewhere close so they could get the stem cells quickly.
It is one small bag, which means, I think, that the donation is “juicy,” a term I heard to describe blood that is rich in stem cells. Sometimes it takes several bags before you get enough stem cells. But if it is a small bag, it means the donor was likely young and male because they are the most likely to have stem-cell-rich blood.
So I’m guessing it is a young man of South Asian origin living somewhere in or near Toronto. Simon’s guess is that it is a young man from Germany because of its large registry. I’m told I can contact the donor a year post-transplant (if he or she agrees). Why a year? I guess to make sure the transplant is successful; you wouldn’t want to get to know someone only to learn later that they didn’t make it.
Love and Laughter in the Time of Chemotherapy Page 13