Cal had bought an old camper van before we’d met, and on our first real date he told me he planned to quit his job and spend a summer driving first east, then west. I told him I had the framework of a book tour building up that would take me east, then south, and there was no reason I couldn’t also go west.
It was one of those plans made half jokingly, after a few drinks, but on that first date, we decided to merge itineraries. Half joke, half promise. The van became a stand-in for commitment: when we talked about this trip, we were placing signposts into our future, saying we wanted to be together for at least as long as the trip would last.
We took action to make the metaphor more concrete. He bought a solar panel. I bought fairy lights.
More than once, as we lay in bed falling asleep, I’d ask in a panic: “Are you sure you want to do this with me? Your original plan was to go alone.”
“That was before I met you,” he’d say. “The plan changed.” He’s one of those people who says what he means and does what he says, which can be just as disarming as the opposite.
One thing we hadn’t planned for when mapping out the trip, though, was that I’d be doing it during my second trimester. I found out I was pregnant on Valentine’s Day, and neither one of us thought it was cause to change our summer plans.
Very early on I’d explained to him that if, somehow, I were ever to become pregnant, I wouldn’t want to get an abortion. I never thought I’d be able to deny the opportunity for life to grow in my body, and Cal understood where I was coming from. This wasn’t a plan to have a child, not at all; it was rather a plan of what to do in case that happened. And when that did happen, we went away to a cabin in the woods with our dogs to talk about it.
We walked across a lake of solid ice and let the dogs loose on the snowy island crowded with black pines. The pipes were frozen, so we brought a flat of water for drinking and peed in a bucket filled with kitty litter. The temperature inside the cottage was well below freezing, and the fire in the wood stove took three days to warm it up, by which time we put it out to head back home.
We didn’t talk about it, then we talked around it, and then we talked about it, and decided that it felt like the decision had been made, and when it was put before us like that, we didn’t want to undo it. This is perhaps an unromantic way of saying we wanted to have a baby together, but decisions made retroactively—maybe even any decisions at all—have a kind of contractual nature. There should be pragmatism as well as an animal instinct.
“Are you sure this is what you want?” I asked, again. “This wasn’t your plan.”
“I love you,” Cal said, “and I don’t think I could have known that this is what I wanted until now that it’s already happening.”
MONDAY JUNE 10
2:35 Dr D and Dr A come to see Harriet. Order chest x-ray. If fever lasts until tomorrow, amphotericin = anti-fungal. Ultrasound for spleen, liver, pancreas, and kidneys re. fungal work-up.
TUESDAY JUNE 11
6pm, starting amphotericin with Benadryl & Tylenol to counter potential side effects. If she starts shaking they will administer Demerol.
If she starts shaking, if she starts shaking.
The terrifying reality of shaking mitigated by the hope of the conditional if. The she, their sick girl-child—I so rarely felt like an object or like anyone’s possession, but this is a reminder that I was. The starts, as in: It will just be the beginning.
THURSDAY JUNE 13
11:30am Harriet awakens
11:40am Harriet had a few grapes
1:30pm Harriet had some rest, put on her eye mask, turned off light
1:40pm IV beeping! Not much rest!
Some things that break my heart: My dad’s use of the word “awakens,” as though I was a lady of leisure lounging in bed all through the morning, and not a teenager with cancer who’d been up all night with a fever. Ditto for “grapes.” I love him for granting me that.
The first time I left my room on my own feet, and not for any appointment, was on Friday, June 14. It was also the first time—and one of the very few times—that I wrote in the notebook myself:
4:50pm Walked (yeah! bit shaky though) down to get X-ray done. Back in 10 mins—very quick, no lineups!
At this point I had been in the hospital for twenty-two days, but already it seemed like it had been my whole life, and would continue to be my whole life.
The worst part was waking up and, for the briefest of moments, forgetting where I was.
Going through stuff in my parents’ basement, I find a toolbox I used to carry from room to room in the hospital. My parents were encouraged to give me spaces that could be “private.” The toolbox locked, but had a clear front. Close enough.
I open the box and find art supplies I never used, orange foam earplugs, and the business card of Posy the clown. In the hospital, I’d started sleeping with earplugs to muffle the constant cacophony of sound; I still sleep with them every night. Like a child with a teddy bear, I can’t sleep without them. I always use the orange foam ones you squeeze up small, insert into your ear, then let swell up to fill the dark spaces. Seeing these fresh earplugs in the box, I pocket them to use for later. There is also an email address on a pink Post-it Note: curlysue_baby14, Sofia (from the hospital).
Sofia was my age and had osteosarcoma. We were introduced at Sick Kids. She was tall, like me, and soft-spoken, and it felt like we would have been friends in the normal world, outside of the hospital, even had we not been pushed together by the nurses because of our proximity in age. When I was home between rounds of chemo, Sofia came over. At fifteen, we didn’t say “come over to play,” like when we were younger, but she didn’t really come over to do anything in particular. I had a computer program where you could upload a picture of yourself and then put makeup and different hairstyles over your picture to give yourself a “makeover.” We took pictures of each other and then did that, putting on more digitally-painted makeup than either of us would have ever worn, though giving ourselves not platinum bouffants or anything, but our own normal straight brown hair again.
A few months after that, Sofia died. Her funeral was held at a local mosque, in a field surrounded by encroaching subdivisions. My parents and I sat on carpets on the floor. I remember looking out at the grey sky, the light filtering through the darkened window beside me. I didn’t believe that God was deciding any of this, and yet here we were. Nobody else had decided it, either.
I put down the toolbox and Google Sofia. I find a picture of her, short brown hair newly growing back, wide brown eyes, smiling in a khaki bucket hat at Camp Oochigeas, a camp for kids with cancer. The caption reads, “Sofia loves Camp!” In the present tense. There is a place in the world where Sofia still exists in the present tense.
The sadness I feel now is awakening a sadness I feel always, and I can’t tell if it’s pure or if it’s selfish, an “it could have been me” sadness. Is that selfish, or is that human?
Midway through the first round of chemotherapy, the doctors met with my parents separately from me, and they also offered me my first opportunity at leaving the hospital. It’s easy to see now how those two events were connected. Tactic: give them a carrot so they can handle the stick. These were professionals.
JUNE 18TH (my dad’s hand)
9:40am Nurse Jenna has talked to Dr. D, and it looks like a short pass out is possible after the blood, which must be after the Vancomycin, so maybe 3:30-5:30 window. Will meet at 5:30pm today for HL, ML, DL + Drs.
10:15am Dr. L visited, some new results back, from flow cytometry and cytogenetics. There is a “marker” called CD56 that has been detected. Meeting is to discuss tactics. Bone Marrow Transplant looks like a good option for near term rather than later. “NK cell” leukemia may be involved.
That pre-meeting was the part to which I was not privy. If I had been, I would have asked what the letter
s N and K stood for.
12pm Vitals 37.0
12:40 Blood transfusion started
12:55 Vitals again. 36.8. All OK. Fluconazole tablets started again.
1:20 Harriet had a bath (“1/2” is added later, in my wobbly handwriting. I must have wanted it to be clear for the record that I did not wash my hair.)
3:40–4:45 Freedom! All 3 of us walked south to Colony Hotel just by City Hall, for Iced Tea and Salad (Harriet), & Ploughman’s Lunch (D & M shared) on the patio called Nathan’s Backyard. Lovely interlude.
**Harriet wished she could come here every day!—Mum
For the first time in nearly a month, for one hour and fifteen minutes, I was not connected to an IV. I didn’t have to pull or push a machine alongside me. The tubes coming out of my upper right side were sterilized and wrapped up in gauze and made a little sausage underneath my t-shirt.
“Living in the moment” has become an industry, but for those seventy-five minutes, I did not consider the meeting that was scheduled for that afternoon. Maybe this is because I hadn’t been briefed on what to expect, but I think it was because my senses were so overwhelmed. Red sun-shapes through closed eyelids. The trembling of the sidewalk when the subway rumbled below. Wind through the leaves on the thin, undernourished city trees.
It was freedom, as my dad said. A freedom aware of its constraints. And interlude was the perfect word there, too, for it means “between the acts.” This was a brief moment, right before what the doctors explained what they expected would be the final act.
5:05 Jenna hooking up the IV again
5:25 Temp 37.5
Then, at 5:30, we had a discussion with Dr. G, Dr. L, and two nurses about the new results the doctors had found.
This is how my dad explained it for our family and friends in his post on the forum:
Harriet’s leukemia cells are rather special and unusual. They looked visually initially like ALL cells that had “gone bad” but that was a “red herring.” Certainly not ALL. The cell “malformation” or the “bad cells” seem to show some characteristics of NK cell leukemia and some characteristics of AML leukemia. “Pure” NK cell leukemia is rare. Marker CD56 is seen. Markers CD4 and CD20 are also involved somehow. Johns Hopkins University was involved in figuring this out, or helping to, in the USA. Because of the somewhat special and less common nature of Harriet’s case, the Doctors suggest that it is prudent to start thinking about HLA typing because a Bone Marrow Transplant may be the best way forward in this case. If a BMT is required, it is not a big deal, surgically, anymore. Stem cells are harvested from a donor who simply gives blood (anywhere in the world), then Harriet receives the BMT through the IV! (No surgery.)
He used an exclamation mark. He used the word special twice. He literally said not a big deal, as if to try and reassure us, especially himself, that everything was fine.
What I remember of this meeting: sitting in between my parents on a peach-coloured sofa in the “family room,” perhaps chosen since it was a more neutral space than my bedroom, or perhaps because the seating arrangements were more conducive to conversation. I could sit up, be involved, rather than lie prostrate in the cot. The two doctors and Jenna, my principal nurse, sat on the sofa opposite. The light was lower than in the hallways and bedrooms; yellow tones, not white. I rested my head on the shoulder of one of my parents, I can’t remember which. I was tired. I don’t remember hearing any more words, or saying any words, either.
The tone of the meeting was polite. Delicate. Jenna looked like she was trying not to be nervous. The doctors spoke slowly, careful with their words. I didn’t look at my parents on either side of me, but I felt their presence like you feel your bed when you’re more tired than you’ve ever been: grateful, but you always knew it was there. I felt profound exhaustion. The feeling was a collapse that was kind of like resignation, but not about recognizing the futility of trying. Rather, it was a further, deeper, submission to the system. I let go. I would let the doctors do the work of fighting the death inside of me, and I would continue to try to do the work of living.
Later that night, my mother’s hand, more matter-of-fact than she usually was in the journal:
9:05pm, vitals 37.0, BP 100/60.
TPN feed back on for 17 hours.
Ate ½ bagel & cream cheese + nectarine + half peach.
Gilmore Girls then I read to her.
Ativan at 10:30pm.
Cal said one of his intentions for the road trip was to learn how to be comfortable in the openness of time. “Doing nothing doesn’t have to mean you’re bored. Doing nothing should feel the same as doing everything. It’s learning how to be comfortable in just being.”
When I found out I was pregnant I thought about that, “just being,” a lot; the little baby growing—and just being—inside of me. And even if I wasn’t actively doing anything, I was growing a life. Making lungs, accommodating new bones, building a heart. Pregnancy is a lesson in letting go: bodies know what they are doing, just as flowers know how to bloom.
“Is there a but?” I asked Cal at one point. “Do I also have to be…happy?”
“No,” he said, “You don’t even have to be happy. You can just be.”
I recently found a Post-It I wrote years ago: “What if I don’t want to write anything anymore? How do I just make people feel feelings?”
I didn’t think about what any of this would have been like for my parents as individuals. I was the one experiencing this; I was the one who was sick. They were my parents, but this was about me, not them. It’s revelatory and humbling to go back through these journals now and see how my illness was also something that they were experiencing, and how they were processing it, each in their own ways. The things they were seeing, the things they had to suddenly pay attention to. The fact that they hardly spent any time just the two of them for months. How they completely, instantaneously surrendered their lives in order to prioritize mine.
My mother has a university degree in home economics, and she most often made notes about what she was feeding me. Food was her medicine. Her entries are usually slightly more narrative, including conversations with the family and friends who visited; when the updates veer towards the banal, I can sense her concern between the lines.
My father, an aeronautical engineer and flying instructor, is very practiced in keeping logbooks for his work, and it’s his logic and organizational system that anchor the journals. His humour comes through (there’s a whole section where he annotates the loss, and then the discovery, of Lilac, my teddy bear, and how he’d asked a nurse to make a hospital-wide Code Yellow announcement); so does his hope (special! no big deal!). He’s most often the one who transcribes the medical information and meetings with doctors.
I found a small boxed-off section at the back of the notebook in my dad’s hand, no date:
MEETING WITH DR. B.
Teenager—autonomy, dependency
Sense of loss re. friends
Hormones, leave for now?
Parents as victims.
Redirect art therapy role plays control.
Parents as victims? What does this mean? That the teenager sees the parents as victims, or the parents see themselves that way? Or is it something else? The reference to hormones was regarding my ability to have children later on in life. This was the start of a conversation with the gynecological department about whether or not that would be possible, and if there was any action my parents could take now to save my fertility for later. They did, as suggested in that note, decide to leave the subject for the moment.
Technology does not exist now but could freeze, as it might in the near future.
Chemotherapy can decrease fertility, but with a bone marrow transplant I would definitely be unable to naturally conceive a child. I was a child then, though; I wasn’t able to think about my own future children.
>
The first ultrasound of our baby happens at fifteen weeks. My hippie doctor had recommended that I wait, and only get a scan if complications arose—“you don’t know what those sound waves do to a tiny, forming body”—but he still gave me a prescription for one when I asked. I wanted to see. I needed to see that it was real.
I’d had hundreds of scans of my insides before this, and it always felt profane. There’s something sacred about the body and its mysteries, and seeing myself—heart, liver, lungs, brain—reduced to pulp and membranes repulsed me. It made me feel like a machine made of flesh.
For this ultrasound, I bring Cal, who isn’t allowed in the room with me until the end of the process. I’m not even allowed to see the screen until he enters the room, too. It must be that the technician doesn’t want to deal with the questions—“What’s that? And that? Is that thing normal?”—but also that they need to make sure everything is okay before opening things up for dialogue.
Both of us see the black-and-white screen at the same time.
“It’s a baby!” Cal says, and I know what he means. This early, neither of us was expecting to see a head and limbs in a baby shape. All I could picture was a jumble of body parts floating, disembodied.
As a precaution, before I travel overseas, my doctor gives me the ultrasound examination report. Obviously, I open the envelope.
Spine: unremarkable.
Brain: unremarkable.
Natural Killer Page 4