Nov 4, 4:00pm, Dr. C said: No fever for 48 hours so cut back on the antibiotics over weekend. Work on eating. TPN being cycled off.
Jen is the nurse tonight. Bath for H. Temp normal at 9pm.
Ready for bed (ie. sleep) at 9:30.
I love how my dad noted the distinction between bed and sleep, since I was always in bed.
After the weekend, a doctor came to say that based on some recent ultrasounds, there might be a small clot in my chest and possible lesions in my liver.
My dad wrote on the forum:
No serious concern, but there may be some small lesions in the liver, probably thought to be the same infection as in the lungs. We knew a bit about that before. The Drs are thinking about a possible opportunity to take a sample from the liver, with a needle, and maybe also from the lungs. But no rush. The Drs are consulting. Balancing the quest for a definitive diagnosis against the risks involved, and considering the alternative risks of prolonged treatment with drugs which seem to be working (or at least helping), but which may be a bit more aggressive than is really necessary.
A plan was being discussed for my release from the hospital following this small procedure, presuming a sample would be found, and the infection positively identified, so the appropriate drugs could be used to more specifically target whatever was causing it. I couldn’t let myself trust this; I looked at it as if through a window.
Dr. L stopped by one afternoon. My parents weren’t with me, and rather than wait for them, she just spoke with me. I was the target anyway. She wanted to tell me that while the discussion among the international specialists still had not reached a consensus, more of the group considered that, with the complications from my current infection, the risks of a transplant were too great. If my immune system was completely eradicated by the even-more-aggressive chemotherapy and full-body radiation required leading up to a bone marrow transplant, the Aspergillus would certainly flare up and smother me.
Another one of the rare moments my handwriting appeared in the notebook:
confirmed that transplant is off, not on hold.
My near-perfect match would still be in the bank, she reassured me, and ready in case I needed in later. This later already loomed large; I didn’t need to be reminded.
I was not just disappointed—I was devastated. I didn’t want a bone marrow transplant but I did want to live, and I had come to associate one with the other. This news made me more upset than my diagnosis had, because it felt as though the doctors were giving up on me.
My nurse from that shift wrote in the progress report:
Pt told by Dr. L that BMT is not to occur now a/t presumed fungal infection. Pt very upset + writer not in w/ pt at this time. Writer spoke with Dr. C who spoke w/ pt @ length regarding this decision. Harriet verbalized understanding. Dr. C also spoke w/ Mr. Lye on telephone after Harriet had called home upset.
Wednesday 6 Nov: 11:20am, Ivy disconnected!
12:00, Escape. Freedom. To Kleinburg for lunch, then very brief visit to O’s house. Back to 8A at 2:50pm.
I was released, my first time leaving the hospital since September. In those two hours and fifty minutes the three of us drove up to a farmhouse fifty kilometres outside of the city where we had a lunch of soup and homemade bread prepared by a woman I’ve known since I was born. There was a clear plastic sheet over the white cotton tablecloth, detailed with tiny pink roses. I’ve never liked butter but the hospital nutritionist told me to try to eat as much fat as I could, so I spread the cold butter in jagged chunks on the fresh crumb of the soft white loaf. On the way home (home, I write, when what I mean is the hospital) we visited my great-aunt for what must have just been minutes, since we had to get back for one of my IV antibiotics.
A few hours after we returned, the doctors came by to tell us that they might like to schedule what was described as a precautionary, minor, “no big problem” biopsy of my liver the following day.
In bed one evening, I send my first friend from my university days in Halifax, who I haven’t spoken with in a little while, a text that’s just a red heart. She responds right away.
I was just thinking of you, and a conversation with you in 2005 where you were talking about motherhood.
I felt so ambivalent about children at the time, but also that having a family was a certainty.
You knew it was something amazing and worthwhile but did not see it as a certainty.
Oh wow. What a memory.
Do you remember what I meant about having kids not being a certainty? That I wasn’t sure I’d get the opportunity or didn’t know if I wanted it?
(I don’t remember ever not wanting children.)
Honestly, I think you were thinking of your health. So, opportunity.
I think the reason I remember is that you asked if I would think of naming a daughter Harriet. It stuck with me. Not in a morbid way.
I respond with the broken red heart.
So much love for you Harriet. And little 2005 Harriet.
The next day, I woke up from the biopsy in the intensive care unit. My liver had hemorrhaged. The liver is a giant bag of blood with millions of tiny blood vessels. It seems only logical that a needle, however thin, had broken it.
PICU Admission
This is a 15 ½ y/o F admitted to the PICU with acute bleed. Abdo distended.
Pale.
Tearful, awake + responsive. Moving all 4 limbs.
Support + encourage parents.
Twelve blood transfusions were administered immediately, two new IVs were inserted, thick as straws, into each of my forearms, and one arterial line was put on the inside of my wrist so as to have constant read of my blood pressure. Nurses finally had to draw blood from the veins in my feet to save space on my overtaxed arms.
My mum told me the doctors said, “We’ve lost her.”
My dad doesn’t remember it this way. “Didn’t they just lose her blood pressure?”
“No blood pressure means you’re dead,” my mum says. “She had to be resuscitated. The doctors asked me if I wanted anyone there,” my mum continues, “and I said the chaplain. He was at home in Thornhill and came down right away. It was nearly midnight.”
Once he arrived, that tall gentle cowboy, my mum fainted. Her own blood pressure dropped. The nurses got her a room, and nearly sent her across the street to be admitted to the adult hospital.
“But they didn’t?” I ask, filling in the gaps I missed.
“No, in the end they didn’t,” she says.
Once more, I felt like a seeing thing, not a living thing. I have a memory of seeing my whole body lying on a stretcher-bed in a bright white room. Was I dead? Is this a memory of the afterglow of me looking at my own body? Or did I just imagine this scene?
The surgeon who had performed the biopsy stayed nearby until one a.m., though his shift would have long been over. He showed us the needle that had been used for the biopsy: “It’s thinner than a strand of hair,” he said, pleadingly. The subtext: please, you have to believe, this wasn’t my fault.
My dad’s notes go all through the night. From 4:30 p.m. until eleven a.m., he was awake and monitoring me, noting morphine shots, blood pressure, oxygen levels, and the measurements taken of my abdomen, swollen and hard with blood. If they didn’t get control of my blood pressure, if the internal bleeding didn’t stop, I would be sent back into the operating room—with a dangerously low platelet count—for them to try to stitch up the leak.
One of my friends sat in the waiting room for two days. She wasn’t allowed to come in: only immediate family were allowed in the ICU.
“Harriet doesn’t have any siblings,” my mum begged the hospital staff, “this is one of her best friends, the closest thing she has. Please.”
In my moments of consciousness, I remember this friend sitting at my bedside and
crying. I was so angry with her. “Keep that away from me,” I said, though I’m not sure if I said it out loud. “I’m not crying.”
At one point I tried to lift my waist up to have a bedpan inserted beneath me so that I could pee, and I fainted. A catheter was inserted, and the procedure had a pain I couldn’t separate from embarrassment. I was even less in control of my own body now.
“Am I peeing?” I asked my dad.
He looked down at the bag hanging on the side of my bed-stretcher.
“No.”
“How about now?”
He looked again. “Still no.”
Some of my nurses from 8A came to visit me while I was in the ICU, and when they were on the other side of the curtain demarcating my space from the rest of the large room, I overheard them talking. One of them whispered, surely thinking I couldn’t hear her, that I’d told her I had started thinking about dying, and when she said this, I thought: “Is that what I was talking about?”
I had recently asked her about some of the other patients on the ward who had died, and we’d talked about my reliance on sleeping pills and how, now weaning, I realized I never wanted to sleep, but wanted to be alive as much as possible. Was I talking about dying then? Now that she’d said it, I supposed I had been.
In reading this section of the journals I become very aware that they could have ended. It could have been over at any point, but life, and the writing of it, feels especially fragile and urgent in these pages. And then, what would an end have looked like? What would my parents have written? Time of death? Would that have been the end?
Heracles said: “Alcestis lay dead.”
The servant responded: “And all of us died with her.”
I can’t say I ever believed in heaven, though I’ve wanted to. What I can say is that I agree with all the scientists and poets who, in their wisdom, point to how, in nature, nothing truly dies. The energy in all things must become a different kind of energy. Though everything living must die, their parts become something else. That’s a kind of continuance. (Are children another kind of continuance?) I have to believe this; I have to believe something. Put my body in the ground and plant a rosebush on top. My body will become worms, then roses, then birds. My body will be endlessly becoming.
The Hospital for Sick Children Department of Psychology
Telephone Consultation
Patient: Harriet Lye
Purpose of session:
Ms. C telephoned Mrs. Lye to inquire about Harriet’s well being and coping with treatment.
Mrs. Lye indicated that the entire family is at a low point right now because Harriet is experiencing complications after finishing her last cycle of chemotherapy. Mrs. Lye also informed me that Harriet has told her for the very first time that she feels that she is “losing the battle.” Mrs. Lye indicated that she told Harriet that she needs to keep on believing in her strength. She also told her daughter that she is at a low point right now but that this will pass. I told Mrs. Lye that it was very powerful when she told Dr. B and myself during our last interview that a massage therapist who was working with Harriet told her that he had never felt a stronger and more vibrant spirit in a weak body. Mrs. Lye thanked me for reminding her about that. She also told me that she is very spiritual and prays in Harriet’s room but she does not know if Harriet prays as well. She also added that she does not feel comfortable asking Harriet about praying because her daughter is a very private person.
Mrs. Lye sounded more uplifted when she told me about a run/walk for cancer. Mrs. Lye informed me that forty-nine people showed up (and a dog) and they formed a heart on the street in front of Harriet’s window. Mom said that Harriet looked out the window and when she disappeared, the students became very emotional.
Summary,
Mrs. Lye seemed upset during the majority of the telephone consultation and her tone of voice sounded a lot lower than in previous conversations. She seemed more cheerful when she talked about Harriet’s friends forming a human heart outside Harriet’s hospital window.
Sincerely,
P. K. C., M.A.
Department of Psychology
In the ICU, the only sustenance that passed my lips for days was ice chips. Then we were told I needed to stop eating even the ice chips: enclosed in an ileus of blood, my gut was unable to digest anything, including water. I threw it all up. My mum made a list in the margins of the notebook of the food I wanted once I was allowed to eat again.
HARRIET WANTS TO EAT:
Rainbow sherbet
Creme soda
Apple juice
Clementines
Red peppers and Caesar dip
Frozen blueberries
HARRIET WANTS TO SEE:
Home
The van is the first home Cal and I built together, with its fairy lights and solar panels, but as we drive around the country, we make pit stops at the house in Toronto we are making into our home. Cal has lived here for almost eight years, with many different stages of roommates, sometimes as many as six people at once, in what one friend called “the hipster mansion.”
The house belongs to Cal’s aunt, whose late partner grew up in it and left it to her. The uncle’s mother and father, who would have bought the house when they married sixty years ago, are long dead, but we still receive mail for them from Polish churches.
It’s a giant, crumbling, poorly insulated manor of a house in a part of town that neither of us could ever afford to live in normally. Cal’s old bedroom was the attic and the heat doesn’t reach that far up, so in the cold months he’d sleep in a hat and sleeping bag, and in the coldest months, when the temperature went below minus twenty, he’d sleep on the couch downstairs.
Over the summer, the roommates move into their new homes and help me move my things in. Neighbours, noticing my belly, start to bring us hand-me-down clothes, old strollers, rocking horses, pictures their kids have drawn for us, and Tupperwares of chili.
Whenever we are home during that hot summer, we make what feel like weekly trips to the paint store at the top of the street, and daily trips to the lake at the bottom. Every room ends up a different shade of white, Cal painting every one of them by himself as I read or nap or walk the dogs. We have many serious, considered conversations about which shade of white each room should be, and he finally confesses: “Harriet. I can’t tell the difference between Cotton Balls and Chantilly Lace.”
It’s funny to think that everything we’re doing now is for the baby. Perhaps that’s not funny at all, but rather the most normal thing. Everything in our worlds now orbits around this. I find it peaceful to have such a singular purpose.
I once told a therapist that my greatest fear was becoming homeless, and he helped me figure out that this was actually about survival. My life fell apart once and I lived through it, and I’m afraid it will happen again and I won’t. A house represents your soul, your self, and not having one represents a fundamental insecurity.
When I move into this house, though it’s owned by family—a family that I am now coming to accept is, through my great fortune, my family—I still fear the same things, perhaps more so. The more you have, the more you can lose.
At 11:55 a.m. on November 8, a doctor from Infectious Diseases came to tell us that nothing was growing yet from the biopsy of my liver. My dad noted later, beside it: still may be able to tell what it was. My fever was already coming back, the blood inside my body was still pooling where it shouldn’t be, and my dad was refusing to give up hope that all of this hadn’t been for nothing.
Days later, the biopsy revealed that the lesions “seemed to be natural fatty deposits.” A crack appeared in my faith in the medical system.
I’ve had a feeling I would give birth two days early, and on this morning, this beautiful and bright fall morning, my contractions start, gentle and purposeful. I walk to the lake and wri
te the baby a letter.
Swans are feeding in the shallows, upside down with their faces and long necks invisible, but I know they are there. At what point does history allow us to use conjecture to fill in the gaps? At what point can I see a swan’s body and tail feathers sticking up in the water and trust that there is a swan’s long neck and orange beak on the other side?
“I don’t think I can know now how much I will love you,” I write. “I’m only just letting myself start to dip my feet into the water, but I already know how deep it is.”
November 16: It’s been a long time since I wrote an update, so here I go! It has been a challenging time for us since the liver biopsy of November 7. We were all in such a state of shock afterwards and needed to focus all our energies (already depleted) on Harriet. Her body is still trying to deal with the physical loss of blood from her liver that formed an ileus around her bowel, putting it into paralysis, as well as the emotional trauma of being so close to going home and rebuilding her life and then being completely turned around—intensive care, immobility, heavy duty narcotics for pain, etc. The progress is slow as her body deals with reabsorbing the ileus and she tries to get up a little more each day.
My cousin came down to stay with Harriet last night for two hours so that David and I could go outside the hospital for dinner. That felt so strange, the two of us together, and neither of us with Harriet.
Fondly,
Mary
The baby, we name him Arlo, is born swiftly, smoothly, a perfect and healthy baby. I have no drugs or interventions or tearing of the flesh. A nurse tells me my body was made to have babies. I smile at what she means to be a compliment and think about how, if this can be said to be true, my body hadn’t known that.
Natural Killer Page 13