Love and Laughter in the Time of Chemotherapy Page 6
Anna had once received a very soft blanket, which she loved, as a birthday present. I decide on that because I think it would be comforting. Laura is the first friend to visit me at home, so I immediately ask if she’ll take me shopping, and she is happy to oblige. When we find the store Anna’s blanket was from, I’m crushed to discover they don’t have any more in stock. And then I see a rack of stuffed animals at the back of the store, and among them, a very, very soft rabbit with long floppy ears and a sweet expression. This is even better than a blanket. I feel victorious. I carefully compose a card saying that I heard she was going through a hard time, and that I am too, and that I had found comfort in a soft shawl a friend sent me, so I thought she might like this soft rabbit. I arrange for a mutual friend to deliver it.
My next project is to set up one of my doctors with a colleague of mine. It first occurred to me during my last bone marrow biopsy when I learned he was single. I thought it would be weird to propose a blind date from my hospital bed, so the minute I get home, I do it. Because that would not be weird at all.
The fact that I have a spectacularly poor record of matchmaking (June had to suffer through coffee with an academic misanthrope in socks and sandals who called her a Pollyanna), and the fact that he’s my doctor, does not deter me in the slightest.
He’s reasonably fit, highly intelligent, and very kind. My friend is all of these things, as well as being very pretty—women always have a higher bar to meet. I check with her first and obtain her permission to pass along her email. Then I email him.
Not content merely to suggest they meet, I take it upon myself to suggest restaurant patios they could meet at. Because, of course, a hematologist and a judge cannot be trusted to make a dinner reservation in downtown Toronto, where they both live, without my careful supervision. Maybe I am obsessed with patios because I was confined to a hospital bed just as spring was coming into force. Maybe it’s because it’s now sunny and warm, and Simon, Jack and Anna, and I are eating all our meals in our backyard, looking out at the ravine in its newly unfurled greenness. It seems really, really important to me that they not eat inside.
In my long email to my doctor, I debate the merits of the rooftop patio at Kensington Kitchen, versus the covered patio at Boulevard Café, both on Harbord Street. I generously suggest all of College Street without confining them to particular restaurants, trusting they cannot go wrong on that strip between Bathurst and Christie.
I do manage to refrain from suggesting that I can perform their wedding ceremony.
I’m feeling so good after I get home that I start to fantasize, and then, dangerously, really believe, that all this has been a mistake—that when Simon and I go on June 5 to get the results from the bone marrow biopsy, my doctor will tell me that not only do I not have leukemia anymore, but that I never had it in the first place. It sounds foolish, but truthfully, isn’t that what we all really long for? Not simply to be cured, but not to have been sick in the first place? So why do we only voice a wish for what is possible? Why don’t we go ahead and wish for what we really want?
On June 3, Simon and I attend a Princess Margaret Hospital informational session about stem cell transplants. My doctor managed to arrange it for us even though the transplant team normally meets with you only when you have a donor. Homer gave me questions ahead of time to ask about the efficacy of stem cell transplants, which I carefully read out to them from my journal:
Do you have a large randomized study of people like me on the long-term outcomes of chemo alone versus chemo plus stem cell transplant?
If not, do you have a reasonable belief that one is better than the other?
How do you weigh a small risk of a catastrophic outcome?
The simple answer to the first and biggest question is, no, they do not have any clear-cut studies. One of the transplant team residents tells me that if I’m in the high-risk genetic subgroup, it is clear-cut that a transplant is better than chemo alone. If I am in the favorable genetic subgroup, chemo alone is better. But I’m not in either of these groups. I’m somewhere in between, though leaning toward higher risk. But they see me as a strong candidate for the procedure, and they could do it as early as mid-July if I can find a donor. It seems to come down to simply this: If you have a donor, you do a transplant; if you don’t have a donor, you do chemo alone.
A successful stem cell transfer would increase my chances of surviving from 50 percent (which is the rate with chemo alone) to 65 percent. In medical terms this is a huge gain. The bad news is that it involves another six-week stay in hospital with another round of chemo (more aggressive even than the one I just had), followed by radiation to make sure my own immune system is absolutely killed off. Then they transplant the new immune system.
The six weeks in hospital is followed by an eighteen-month recovery period and during the whole time they are watching carefully that this new immune system does not attack and kill me (it is meant to attack only any residual leukemia cells, but it might also perceive my own organs as invaders). The chances of the transfer killing me are 10 to 15 percent, yet doing it only increases my chances of survival by 15 percent. I run all this by Homer and he thinks I must have misheard, because if those were really the odds then it would not make sense to risk the transplant—yet the hospital is recommending it. Maybe I did misunderstand. Probability and statistics is the only course I ever got a C in, and it’s way harder to process the risk when it concerns your own life and death.
I never contemplated that the road to recovery would be more than two years long before I returned to work. I had not pictured that Jack and Anna would go from almost twelve to almost fourteen before I returned to them as I was before. I had not (in my childish optimism) realized that when they had been offering me a cure all this time, they had not meant they were handing me my life back (which is what I had thought) but rather they were handing me a lottery ticket.
I decide to put the idea of a stem cell transplant completely out of my mind. Since it is out of my control I will not think of it. Instead, I’m going to concentrate on the fact that so far I’m doing well with the chemo alone. I’ve got the cruise we booked for my parents’ fiftieth wedding anniversary in the second week of December to look forward to, and I spend the day before my appointment on the phone with a travel agent sorting through various options for other trips. I find it overwhelming to search for things on the Internet. I always prefer speaking to a live person, so I start with the tour company I used for my trip to Africa. I want Africa again, but the agent tells me October and July are the best times to see the migrations across the Serengeti and those times don’t work for me, so instead I ask about Costa Rica.
She wants to know how I heard about their tours. My favorite question! I launch into the story of how Simon and I met on one of their tours in Africa and how now, fifteen years later, we want to go again, but this time with our eleven-year-old twins. She loves the story. I offer to do an infomercial for them. She laughs and I laugh too, to show I was totally kidding. I wasn’t.
Simon and I go to see Anna in her opera company’s production of East of the Sun, West of the Moon at Harbourfront. I get to revel in all the witches, enchanted bears, and dancing trolls that have been missing in my life this last month. We eat a dim sum lunch at a restaurant overlooking the lake. Then Simon pushes me in a wheelchair along the boardwalk even though the wind off the water is cold. I can walk, but I’m weak after a month in hospital.
I can picture my own magical moment so clearly. The doctor will admit his mistake in his usual charming, low-key manner. We will all have a good chuckle about it. And because I like and respect him (hey, anyone can make a mistake) and because I will be so relieved, I will not even think of suing him or by extension the hospital. I think this is pretty noble of me.
Then the bunny returns. Not literally, but my friends send me a grateful email thanking me for thinking of their child, especially while immersed in my
own struggle, but, and this is a big but, regretfully telling me she would not want to have people treat her differently, to have people know something is wrong.
My attempt at matchmaking fails as well. Surprisingly, to me that is, though not to anyone else, the doctor never responds to my email suggesting that patio date.
Instead of seeing these small failures as a sign of larger ones to come, I arrive with Simon for my appointment, wearing something pretty for the first time in a month—a short striped skirt and peach-colored sweater—and clutching a list of questions, the first of which is whether I can go snorkeling in Costa Rica this winter.
The consultant arrives, with a nurse in tow, pulls up a little stool to sit on, and tells us the biopsy results.
The induction chemo has not been successful.
I still have leukemia.
He explains that he had not expected to get the percentage of leukemia cells in my blood completely down to zero, but that a successful induction means that the proportion of cancer cells is down to less than 5 percent, and the biopsy showed an amount slightly over that, somewhere between 5 and 10 percent. I just missed the cutoff.
Homer explains to me later that the cutoff is arbitrary in that a few percentage points past it may have been okay, but they have to have a cutoff. Still, this means instead of moving on to the consolidation chemo sessions, I have to do another month in hospital for another round of induction chemo, but now at five times the strength of the first round, and with three types of chemo instead of two. The third type is to weaken the enzyme in my genetic mutation that is preventing the chemo from entering the cancer cells.
The words “drug transport through cellular membrane” pop into my mind. I’ve copyedited that line. My mother was doing her PhD in biochemistry at the University of Toronto when I was in high school. I used to proofread her papers for her. Her research was about the ability of certain drugs to pass through cell membranes. I didn’t understand then what I was reading. My job was to insert all the missing articles of speech, the thes and as that the Marathi language does not use and that my mother always left out. My only questions were along the lines of “Is it the membrane or any membrane?” I didn’t care which, I just needed to know. Now I care.
This second induction round will involve FLAG-something chemotherapy. I don’t know what the acronym stands for, but I picture a battle flag being replaced with a white one of surrender. My particular leukemia is proving chemo-resistant, which means future relapse is more likely than not. Instead of a 50 percent chance of being cured with chemo, I am down to a 40 percent chance. And that means a stem cell transplant is most probably the way to go.
This particular FLAG regime is fairly new; my doctor tells me that so far it has been given only five times at Sunnybrook, and ninety-five times at Princess Margaret. I am healthy otherwise, so I’m considered a good candidate for it. We listen to a description of how very toxic it will be. There will be worse side effects than before, a chance of ending up in the Intensive Care Unit, a chance of death even. I will be very, very sick.
Simon has his head down; much later he tells me he thought he was going to pass out, he was so shocked. We felt caught off guard. It hadn’t even occurred to us that this was a possibility, that the first round of chemo could fail. We didn’t even twig to the fact that the doctor had a nurse with him when he spoke to us, something he doesn’t normally do, to help us cope with the news.
Because I don’t want to be caught so off guard again, I ask what the next treatment would be if the second induction also fails.
The answer is, nothing.
And I think, no, no, no. Yet again, the doctors are not following the right script. I know people who’ve gone through this, I’ve seen the movies, I’ve read The Fault in Our Stars. You can torture people with treatment options for years, years! Surgery, radiation, clinical trials, experimental drugs. Do it to me! Surely I can’t reach the end of the line thirty days after being diagnosed with leukemia.
The doctor is calm. He says he believes this chemo will work. But if it doesn’t work, it means I’m not in remission. If I’m not in remission, I’m not a candidate for stem cell transplant. Even if I’m lucky enough to find a donor, I can’t do a transplant if I still have leukemia in me. So what I thought was such a terrifying option now feels like something I can only dream of being lucky enough to try.
When the doctor leaves to see his next patient, the nurse stays with us. He is kind, gentle, soft-spoken. He wants to know if there’s anything he can do, if there is anything we need. Simon points out to me later that he is my soft rabbit. Now I understand. Sometimes a soft rabbit is not just a soft rabbit, but a sign, a scarlet letter, a portent of doom.
And so we leave. I feel ugly and sad and defeated. All along I was just worried about the cancer coming back at some point in the near or distant future. It did not occur to me for one moment that they would not be able to get rid of it in the first place. It did not enter my mind because I felt so good! It’s like that relationship quip, “How can I miss you, if you won’t go away?” That’s how I feel. How can I even get to the point of worrying about the cancer returning if it won’t leave in the first place? How could I be so worried and then find out that I wasn’t even worried enough? I thought I was scared before. That was nothing.
Now
I
Am
Scared.
Is this a lesson for me, to appreciate the days I have, to stop and smell the roses? But I don’t need a lesson. I already left no rose unsmelled. Seeing a cardinal always made me happy no matter how frequently I saw one in a single day. A pair lives in our backyard, and another pair lives a few houses away, so they’re not exactly a rare spotting.
Instantly I change my mind about my silly image of being first in line, about needing to take my turn. I decide I did not need this; I did not deserve this; no one deserves this. But to my cry of “Why?” the universe just shrugs its shoulders and says “Why not?” Fair enough. Why not me, after all? Yes, I didn’t deserve it, but I didn’t deserve all the good I got either. It works both ways.
I had thought I controlled everything that happened, to me, to my family, to the litigants who appeared in front of me. My own mother-in-law feels she has to apologize when she uses too many exclamation marks in emails to me because she knows I will disapprove. I was upset when it rained for most of the week we were in Mexico the January before my diagnosis because I was miffed to discover that there was actually something—weather!—that was beyond my control. Now I’m learning what a fantasy I was living; there is nothing within my control.
Simon says simply, “They will get the leukemia with this round.” He reminds me that they are still saying this is the plan to cure me.
Homer says to focus on two things only:
1. Your job is to get better, period.
2. Do not admit the possibility of failure, as you have never failed at anything you ever tried before.
On Saturday, Simon, Simon’s mom, Jack, and I drive up north to collect Anna from her Music by the Lake camp and we get to hear her symphony orchestra perform. The camp is for middle school students and they have been practicing four hours every day for a whole week and then listening to the professional faculty play concerts every night. They start with Vivaldi’s Spring and from the first beautiful note, perfectly in tune, unlike any other school concert we have ever been to, I am blown away by all of it: the swell of the oh-so-familiar music; the blue sky; Anna’s earnest bow strokes; the benches crowded with family members.
We run into several of our camping friends after the concert. Their teenage daughters, Liora and Ella, hang back while we chat, but as we say goodbye they both hug me, not something they would normally do, and it brings tears to my eyes because it is tender, it is close, and it says what they cannot: I hope you’ll be okay.
I’m tired from the morning and our car is quite a distance
away from where we’re eating our hot dog lunch. Simon asks one of the camp directors if he can bring our car up to the picnic tables and the director offers instead to drive me to the parking lot. In the brief drive, he speaks about his wife, who also has trouble walking very far, and his voice catches as he describes how sick she is. In a strange way it comforts me by reminding me, again, that I am not alone.
There’s a Hindu fable about a man who goes to the gods for help for his seriously ill son; he is begging for a cure. The gods say, Sure we’ll help, provided, that is, you bring us a handful of salt from a house in your village that has never known sorrow.
Chapter Ten
Barely a week after my escape, I find myself installed right back in Cancer Ward 2, or Hotel California, as I start to call it. You can be discharged anytime you like, but you can never leave. While I’m worried about what’s to come, uppermost in my mind is that it would be easier to face the extra-toxic chemo than the doctor I tried to set up with my friend. I confide my feeling of awkwardness to a couple of the female members of my medical team, a resident and one of the nurses, and that immediately makes me feel better.
“Oh my god,” they chorus. “We’ve been trying to set him up for years, he’s so stubborn and picky. Your friend sounds great. We’ll get right to work on him, don’t worry.” Word of my plotting spreads (as these things do) and another member of my team drops by my bedside to chat and reveals that he has recently been through a breakup and would love to meet someone.
“I’m totally on it,” I tell him. And I do have just the person for him to meet, but I tell him I have to wait until Monday to contact her because I only have her work number not her home number (she’s a lawyer who used to appear regularly in front of me—again not weird at all—and I never do end up contacting her). So now some of my medical team drops by to gossip about relationships, which I love, and the subject of my genetic mutations does not even come up.