When they push into my space, I push back. I am not giving up an inch without a fight, I decide.
I wake one morning to find they have moved their mother’s bed, so it’s right up against the curtain between her bed and mine, to make more room for themselves on the other side. But when nurses need to access the woman from the curtain side, which is several times a day, there’s no room for them to stand, so they have to stand in my space, which means I can’t get out of bed as my IV stand is on that side.
I speak to my nurse about it, and she makes them put the bed back to where it was, which makes them hate me forever. There are a lot of raised voices and angry accusations that it isn’t fair. They think my side of the room is larger to begin with, thoughts they share in detail with every nurse and every visitor.
I win that battle, but lose the ongoing one about the bathroom. If they hear me even start to stir out of bed, their mother hobbles to the bathroom as fast as her stiff legs can take her, so she can get there first. I’m convinced she doesn’t even have to go—that it’s just payback.
I mentally give my own ending to Sartre’s famous line: Hell is other people…in the hospital bed next to yours.
The sisters are either both there, or one is there and the other is available on speaker phone, around the clock, barraging the doctors with requests for more and more tests, while the doctors with infinite kindness and patience explain that their mother’s pain is muscular, not indicative of a return of the cancer, and what she really needs is to be in a rehab hospital, not a cancer ward. I wait to see who will break first. It seems like she is winning because I keep hearing them set discharge dates that come and go and there she’d still be. But one miraculous day, Sunnybrook flat out refuses to redo some scans, saying the old ones are perfectly fine, and actually discharges her to a rehab hospital.
I am discharged August 29, after I prove I can go 48 hours without a fever, only to be readmitted five days later because I’m sleeping 24 hours a day. I can’t even manage to get up for meals. They suspect it’s the $10,000-per-month fungal medication that’s to blame. I had been put on it as a precautionary measure, even though the lung biopsy was not definitive about whether I actually had a fungal infection.
When I’m admitted this time around, no beds are available in the cancer ward, so I end up in some general ward with three other women, all much older. The woman across from me complains about everything at the top of her voice, starting with the delivery of her breakfast tray at eight o’clock in the morning.
“Three orange juices! Who can drink three orange juices?! This is outrageous! I want the supervisor! I want to call and make a complaint! This is ridiculous! Who can drink three orange juices?”
“You don’t have to drink them,” I say. “Throw them away.” Who cares? I think. Why does it matter? I don’t have the energy or breath to speak very loudly, plus the tears are starting. She hears me, but just glares and keeps going. She buzzes constantly for nurses and yells more complaints if they take more than five minutes to arrive. I try to ignore her but I can’t. A woman visiting her mother in the bed next to mine looks at me with great sympathy, and then goes over to the complaining woman.
“Do you think you could not shout?” she asks her gently. “There are other patients here. They’re really sick. They can’t take this noise.” The woman looks at her blankly and keeps up her angry complaints.
I finally make it back to the cancer ward, and the roommate I have the day before I’m discharged is the best roommate I’ve had to date. It’s too bad it’s for the shortest time. We bond immediately, because it turns out she is exactly my age, forty-seven. We share the injustice of being too young to be so sick, surrounded as we are by patients in their seventies and eighties, patients whose grandchildren are older than our children are.
She and her husband are soft spoken with some kind of eastern European accent. He has longish, wavy hair and looks artistic. Her daughter is sixteen and spends most of the day at the hospital with them. Her cancer seems to be in an advanced state; she can’t get out of bed, and her only drug is morphine, which she self-administers through an IV drip. She comments admiringly on how I can manage to get to and from our bathroom by myself, and I remember to feel lucky.
I go home on September 7, and the next hospital visit is not mine, but Simon’s. He’s admitted overnight to have his thyroid gland removed, because they found pre-cancerous cells. I’m overwhelmed. Could this really be happening to us? Could I get leukemia, the children get into a car accident, and Simon get thyroid cancer (the distinction that it is “pre”-cancerous is lost on me at the time), all in the same summer? Apparently we can, and apparently we can just roll with it. In fact, the whole house has been revolving around me for so long that Jack’s only reaction on hearing that Simon has to go to the hospital overnight is “But who will take care of Mummy?”
In my journal, Simon, in his minuscule handwriting, carefully notes down the schedule of my medications:
Before breakfast: voricanazole, Pantaloc
With breakfast: magnesium, potassium, Marvelon
Before dinner: voricanazole
With dinner: magnesium, postassium
Bedtime: zopiclone, hydromorphone
On the same page, he also notes which of the above prescriptions need refilling, and when the nurses last changed my ileostomy bag and the dressing for my Hickman line.
On the very next page are my notes from the same time period:
Kiawah Island, South Carolina
Aruba, Eagle beach—best
Turks & Caicos, Smith’s reef—great snorkeling!
Secrets Aura Cozumel, adults only, swim up to room
Iberostar Grand Rose Hall, Jamaica, great reviews, lobster!
Chapter Nineteen
On the outside of Princess Margaret Hospital, there is a banner that declares, in capital letters more than a foot high: WE CAN CURE CANCER IN OUR LIFETIME. I had taken that less as a fundraising slogan and more like a sacred covenant. Our lifetime means my lifetime—means my actual life.
Inside, Simon and I are sitting, listening to the transplant team list all the ways, and all the times, the transplant could be fatal to me:
You could die right at the time of the transplant itself if it does not “take” (that is, if the donor stem cells do not set up shop in your bone marrow and start producing immune cells), because we will have eradicated your own immune system through intensive chemo and radiation, so you will end up with no immune system at all.
You could die shortly thereafter, even if the transplant does take, of acute graft-versus-host disease, if the new immune system (the graft) fatally attacks your organs (the host), which it will perceive as invaders.
You could die subsequently, of chronic graft-versus-host disease, if the new immune system decides to attack your organs later.
You could die at any point of an infection, since we will be suppressing your new immune system so that it does not attack your organs, which means it is not as available to attack infections.
Swimming in fresh water, eating unpasteurized cheese or sushi, exposure to direct sunlight or large crowds could also kill you, because all of the afore-mentioned, besides being among your favorite activities, carry increased risks of infection.
On the bright side, you could survive any of the above and live out your life as an invalid. You could possibly return to work sometime between one to two years post-transplant and never.
Sign here and here and here to acknowledge you are fully aware of all the ways this transplant, which is meant to save you, could actually terminate your life prematurely, or leave you a fragile shell of your former self. Because really, what do you have to lose? You have a greater chance of dying if you don’t have the transplant, because the leukemia could come back and you probably wouldn’t survive another round of induction chemo. (Remember what happened last time!)
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It occurs to me that the Hippocratic oath, rather than the “First do no harm” of popular belief, should actually be “You can’t say we didn’t warn you.”
Yet, without discussing it, without researching it, without thinking about it even for a minute, I sign and sign and sign. Even as tears are trickling down my face, I sign, because it is clear this is my best chance for a cure. That is what I hear, even though those are not the words they ever use.
What I am drawing on is not my medical knowledge, which is zero, but my knowledge as the mother of a preteen girl. I know my subtext. When Anna is past the point of no return, regarding hunger or sleep, I can tell, because that’s when she refuses all offers of food and resists going to bed. When she is hostile and moody, and pushing me away, she is actually asking me to demonstrate my unconditional love for her. It took me a long time to hear her meaning, rather than her words, or her tone.
And my father thought there would be no use for an English literature degree.
When Anna was seven years old, Simon, returning from a trip to the doctor’s with her, reported that she had cried after getting her flu shot. Before I could commiserate, he added, “She cried because it didn’t hurt, not because it did.” I stopped, confused. He explained that she cried because she had been dreading getting the shot so much that when she found out it wasn’t painful after all, she regretted the time she had wasted dreading it.
Even her meltdowns at the age of two were similar. After a tantrum one morning, over an issue whose origin I can’t even remember, she insisted I shower again. I had showered just half an hour earlier, so I refused to give in to what I considered to be another irrational demand, on the principle that, as with terrorists, you should never negotiate with toddlers. I regret that now.
It wasn’t an irrational demand. It was a desperate desire to start the day afresh, because she regretted the time she had wasted having a tantrum. Her wish to turn back time in the hope of a new beginning, a happy outcome, wasn’t childish at all, but an elemental human desire. What was childish, and therefore so moving, was her belief that it was possible.
I wish I had acquiesced, back when I possessed the power to turn back time itself; the power to be Superman, reversing the earth’s orbit, and bringing the dead back to life. The day will start anew. No one will get upset. No one will be diagnosed with cancer. All I had to do was step back into the shower.
Simon takes me to Princess Margaret Hospital for the first of two full days of tests to prepare for the stem cell transplant. It ends up being nonstop poking and prodding from 7:30 a.m. to 4:30 p.m. Blood work, lung function tests, CT and MUGA (heart) scans, and the one I’ve learned to fear because I’ve now had it three times, a bone marrow biopsy. At least that day’s doctor reassures me she is fairly confident the leukemia is still gone, because my blood work results are good. But worse than the many needles is her rundown of the horrific possible side effects of the transplant, such as infections, diabetes, loss of my sense of taste, secondary cancers, and repeated hospitalizations to deal with graft-versus-host issues.
“Eat all your favorite foods now!” she says, in what I feel is an inappropriately cheerful tone.
“Do you think I could go back to work by the spring?” I ask. I think I’m being sufficiently cautious and realistic, but she responds with an unequivocal “No.”
“Twelve to eighteen months post-transplant would be realistic,” she says, and I’m so busy calculating that instead of early 2015 this could mean as late as the end of 2016 that I almost miss her adding, “Some people are never able to return to work full-time.”
When that sinks in, my eyes fill with tears. Simon squeezes my hand and his eyes are red-rimmed as well. Being a permanent invalid seems even worse than dying to me.
In an attempt to alleviate the situation, she quickly adds, “I have a patient who is twenty years post-transplant and doing great.” I wonder, is that an anecdote or a promise? I ask when I can get my ileostomy reversed (so my intestines are safely back inside, where they belong) and she gives me the same depressing time frame of twelve to eighteen months after the transplant.
I keep going. “How soon before I can travel, do you think?” I’m thinking of the cruise we had booked for my parents’ fiftieth wedding anniversary in a month’s time. We had to cancel it, of course, but I’m trying to calculate how long before we can rebook it. I’m also thinking of my optimistic list of recommended vacation spots, collected variously from friends and TripAdvisor reviews.
“You have to take things one day at a time,” she explains. “Try not to plan out the future.”
This goes against every grain of my being; but I guess I’m going to have to work on it, otherwise I’ll face constant disappointment. Also, I’ll become paralyzed with depression if I think of normalcy as being a year and a half away. I have to think about how to make the hour I’m in as happy, and bearable, as possible.
“At least she didn’t mention any risk of dying this time,” I say to Simon as we leave, trying to extract something positive out of the meeting.
“That’s because, now it’s going ahead, there’s no point talking about that,” he answers.
I had actually thought it was because the risk had magically disappeared. I feel my old optimistic self inside me like one of those Weeble toys I used to have, those tiny egg-shaped dolls that immediately bob up when you push them over. “Weebles wobble but they don’t fall down!” was the accompanying commercial jingle.
When will you ever learn, I say to my inner Weeble.
It ignores me.
The last check is by the hospital dentist. They want to make sure there is absolutely no problem, because even a tooth infection could become fatal in the aftermath of a stem cell transplant, when you have no immune system. The dentist is cheerful and kind and pleased to report that my teeth and gums are fine.
“Book a follow-up sixty days post-transplant,” he tells me as he’s walking out the door.
“Wait, what?”
He pauses and looks back at me expectantly.
“Uh, nothing, that’s fine, I’ll do that.” He smiles again and leaves.
What I had wanted to do was confirm with him that his casually asking me to book an appointment two months after my transplant was actually him assuming—no, promising—that I would be alive at that point. I decide that would be pushing it, but I’m elated nonetheless and can’t wait to share the news with Simon.
“He asked me to book my next appointment for the end of December,” I announce to Simon, when I rejoin him in the waiting area. “December, that means he expects that this will all be fine, right? Because otherwise why book an appointment for after the transplant? You wouldn’t do that for nothing, right?” I’m doubtful again, though, when I consider a friend’s visit right before my transplant. Despite his busy work and family life, he drove all the way from Boston to Toronto (a round trip of eighteen hours) just for me. At the time, I was delighted to see him, but now I’m thinking, maybe he made all that effort because he thought it might be his last chance to see me.
This is getting too confusing. It would be easier and, frankly, more scientific to read tea leaves or scattered chicken bones.
Simon takes me to Toronto General Hospital on October 21 to get a Hickman line put in again. The doctors had taken it out in that brief period I had between the consolidation chemo and the transplant. Now I need the line for more chemo and for the stem cells. Because it hadn’t hurt the first time (other than my feelings from that doctor ignoring me), I consider booking tickets to the musical Wicked in the evening following the appointment, because Anna really wants to see it. But it’s a good thing I don’t, as the procedure is agonizing this time around.
The surgeon freezes one side of my neck and then starts inserting the tube into the vein on the right side of my chest, where the tube had gone in before, only to be foiled because the vein is blocke
d. He jabs repeatedly, but is unsuccessful getting through. He periodically increases the freezing because I’m trembling with the pain. Just when I think I can’t bear it any longer, he announces that he’s sorry, but he has to give up on the right side and repeat the whole procedure on the left side of my chest.
I now have the added worry of blocked veins, and so I ask him fearfully if he has to do something to address that.
He laughs and says no, that your body uses other smaller veins around the blockage instead, “so your head won’t explode.”
It takes me a second before I feel reassured, because you don’t like a doctor to ever, ever, use the words “head” and “explode” about you, even if they are separated by the word “won’t.”
The pain is awful. Not only at the surgical site, but all through my neck and upper back. My head aches, my teeth are throbbing, and it hurts to swallow. I sleep on and off all day, and I look a bit scary with my neck bandaged on both sides, tubes dangling off one bandage and a pink stain all around (that I first think is blood, but then realize is the pink solution they cleaned the area with before the surgery). I am self-medicating with the hydromorphone tablets I have left over from my most recent stay at Sunnybrook. I’m assuming that is okay.
My surgeon on this go-round was charming, referred to me constantly as “dear,” and talked me through every step. But it was so painful, during and after, that it made me think fondly of the doctor who did it the first time around without speaking to me, because that time, it didn’t hurt at all. I feel like I should take back my complaint.
Homer and Vivian visit me before my transplant, bearing multiple containers of takeout dim sum. I tell them about how I read that a stem cell transplant costs $500,000 and I ask at what point will they stop offering me all these expensive treatments? So far, I seem to be getting the absolute best the Canadian medical system has to offer.
Love and Laughter in the Time of Chemotherapy Page 12