Love and Laughter in the Time of Chemotherapy Read online

  I try to focus on the fact that, despite all the attendant risks, my team seems confident that this regime will put me in remission.

  My friend Vineet told me I should tell the universe what I want. So this is my positive message to the universe:

  At the end of this month, June 2014, I will achieve remission.

  At the end of the next month, July 2014, I will find an exact-match stem cell donor and I will have a successful transplant.

  Eighteen months after that, January 2016, I will be back in court.

  In July 2016, Simon, Jack, Anna, and I will be standing on the Serengeti plain watching the migration of millions of wildebeests and zebras.

  And in 2047, when I am eighty and looking back on my life, I will call this two-year struggle a “worthwhile lesson” rather than a “hellish ordeal.”

  I was so caught by surprise this week to be told that this second induction chemo is the last treatment option they have for me that I resolve to prepare myself better for the future. So I enquire about other options. In Ottawa, they will do a stem cell transplant even if you are not in remission, so long as you have a donor. In Vancouver, they will do a transplant using umbilical cord blood. I don’t know if I can use the cord blood we banked after Jack and Anna’s birth. In Hamilton, they will do a transplant with a half match (a 5/10, which is what my brother was) as long as you are in remission.

  My friend Lois from law school who now works at Johns Hopkins University in Philadelphia contacts me with information about some clinical trials in the United States. They are also experimenting with things like stem cell transplants with a half match. It seems much scarier though to think of going to the States. Because it is a trial, the drugs are covered by the company administering them, but you have to pay your own hospital and other medical expenses and there are the travel costs and the accommodation costs of whoever is accompanying you. It would bankrupt you, I think. Plus, I was told at my information session at Princess Margaret Hospital that a half match (or mismatch, as they more forebodingly call it) increases your risk of dying from the transplant itself from 15 percent to 30 percent. That seems way too high.

  When I call the ward the day before my admission this time around to make sure there is a bed available, the nurse asks me if I want a private room. “Absolutely!” I say. I’m delighted because I didn’t think that was even a possibility. But it’s clearly some kind of mix-up because when Simon and I arrive on the morning of my admission, not only is there no private room, they ask if I would mind sharing a room with two men, because the alternative would be a bed in the corridor. I pitied those corridor patients during my first month, their belongings in piles around them, subject to the lights and the noise all through the night, with patients edging by with walkers or wheelchairs, and nurses and doctors and residents rushing past. So I say “Fine” and regret it immediately.

  The first man is much older than I am and moans and complains constantly, while the other man who is around my age burps (and worse). The noises I hear from the bathroom make me avoid it entirely, even though it means dragging my IV stand down the hall to the toilet in the shower station.

  “You never visit,” the first man accuses his wife, almost every time she visits.

  “I’ve been here every day.”

  “You only stayed a few minutes.”

  “I was here for four hours, you were asleep the whole time.”

  By this time they are glaring at each other. And yet there she is the next day and they go through it all again. I decide I wouldn’t bother if I were her.

  The second man is on the phone fighting with his insurance company all day. Whenever we make eye contact, we just look at each other, neither one of us smiles. Two nurses with mops once rush in to clean our bathroom and tell me, “Don’t use the bathroom for a few hours!”

  “Don’t worry,” I answer, “I’ve never used it and I never plan to!” After four days I am moved to a two-person room with a quiet woman. I don’t have a window, but that is the least of my concerns this time around.

  “CBC Radio wants to do a documentary about you!” Kate is excited. I’m not so sure. Do I have the energy in the middle of chemo to speak to a reporter, I wonder. Shouldn’t I be concentrating on surviving my treatment? But I don’t want to seem ungrateful. This is the result of Kate’s unflagging efforts to spread the word about my search for a stem cell donor. She has been contacting every person who has ever known me. The CBC reporter, Alisa, was immediately interested because she knew me from a story she’d done about an international adoption I presided over. I decide I should say yes and before I know it Alisa is at Sunnybrook to record the first of several interviews.

  “I have a few questions,” she tells me smilingly when we meet, “but really I just want you to talk about how you’re doing—tell me stories.” And so I talk. I talk about being scared, I talk about Jack and Anna. She interjects only occasionally. “What music do you listen to?” she asks when I tell her about how I rely on a borrowed iPod to block out all the noise in the ward. I mention Jim Cuddy, because I try to imagine, along with him, that I have a skyscraper soul, “with mud in my veins and steel in my bones.” She loves that and begs me to sing those lines for her into her microphone, but I refuse. There is only so much I am prepared to do to get a stem cell donor.

  She says I gave her gold. “I could do a five-hour Manjusha show if they would give me the time,” she gushes. That makes Simon laugh when I tell him, because his life is nonstop listening to the Manjusha show.

  A member of my medical team is there at the beginning of the interview, though he tells Alisa he doesn’t want to be taped. He tells her that when he first saw my name written next to this extra-strong chemo regime, he wept. And he tears up even as he is speaking about it. At first I am surprised and touched, but after contemplating it further, I decide my doctor’s no-nonsense approach, that this is just the next thing we recommend to cure you, even with the statistical risk in play, is better than scaring me with tears. Since statistics are cold, and since I don’t really understand them, I don’t think about them. But seeing a professional cry because they feel sorry for you would alarm anyone. His tears scare me more than the actuarial risk of death I face. I can’t help thinking it must be dire if members of my medical team are weeping for me; the next thing you know they’ll be praying for me, and then for sure I’ll know the end is nigh.

  Alisa and I start off in the visitors’ room as there is no one else in there, when a nursing manager and some hospital communications people come bustling in and admonish me for not clearing the interview with them first, which never occurred to me. They’re accommodating enough in the end though, even finding us a small closet in which to have the interview. It cannot be in my room in order to protect my roommate’s privacy, though Alisa really wants ambient hospital noise (the IV alarms would have come in useful for once). One of them even gets quite chatty, mentioning helpfully that her niece, age twelve, died waiting for a stem cell donor that was never found.

  Meanwhile, Kate keeps my spirits up with constant updates about all the stem cell drives that are happening, in addition to the big one planned in Mississauga on July 13. My uncle in Scotch Plains, New Jersey; my friend Kathie in Ithaca, New York; my aunt in Pune, India, are also organizing drives. Even the Asian American Donor Program, an incredible organization, is planning a drive for me in Milpitas, California.

  My plea for a stem cell donor has been published in a newsletter for all the Marathi organizations in North America (someone from Maharashtra, India, would be my likeliest match). This newsletter is also sent to all Marathi households (some 1,200) in Toronto. There have been stories about my search in several South Asian newspapers, magazines, TV and radio shows, and in the Toronto Star.

  Kate has been urging people to go to my Facebook page, which she created, to share it and like it and add comments to it, because the more activity on the page, the
more people will see it, and the more likely they will be to go to onematch.ca or to an event to register. Even people who are not in the target ethnicity or age range may know someone who is. When Kate finds out that blood donations in Canada are at a five-year low, she urges people to give blood as well. And Alisa’s documentary, Manjusha’s Match, ends up airing nationally multiple times.

  I’m going to need an awful lot of people to sign up. Only one in three hundred people on the registry will end up being a match for someone, and not a match for me particularly, but a match for someone, somewhere, in the world.

  And then, on June 19, 2014, Senator Asha Seth makes the following statement in the Senate in Ottawa, which I don’t hear about until well after the fact:

  Hon. Asha Seth: Honorable senators, it is a tragedy when our citizens suffer through no fault of their own. This is the case of Madam Justice Manjusha Pawagi, a wife and mother of twins who is currently in the fight of her life against a rare type of leukemia.

  You may have heard of this highly accomplished 47-year-old who is also an award-winning children’s book author, a Stanford-educated journalist and, since 2009, a Brampton-based family judge. If she makes it through her second month-long round of chemo, she has only a 50 percent chance of survival.

  However, her chances could be significantly increased through a simple procedure known as a stem cell transfusion.

  Unfortunately, in the South Asian community, and in many minority groups, there are very low rates of blood and stem cell donations, making the chances of finding genetic matches more than one in a million due to lack of diversity in the blood and stem cell supply. This lack of participation is reflected in the Canadian Blood Services’ reports, which show that more than 70 percent of their donors are Caucasian.

  Establishing stem cell registries that reflect the diversity of the Canadian population is crucial because stem cells have an incredible ability to develop into many other types of beneficial cells, and in treating over seventy diseases worldwide.

  It is imperative that we encourage our entire population, and especially minority groups, to register today with a blood and stem cell registry such as Canada’s onematch.ca.

  Justice Pawagi is just one of the thousands of people in our country and around the world who wait with a very heavy heart for a donor, a savior, a hope to regain their health.

  It is not too late for Justice Pawagi and I hope to bring a positive change in this case, but I need your support in spreading this urgent message for others.

  Apparently some government official had read the newspaper article about me and it got passed up the government chain until it reached the Senate itself. Simon thinks I shouldn’t mention this Senate speech.

  “People won’t be able to relate,” he says and I can totally see his point. The average person in my situation does not get a mention in the Canadian parliament’s upper chamber. But I think the whole question of privilege and power is an important one and I should address it head on, not hide it. Why am I getting all this attention?

  Is it “connections”? The word has such negative connotations as it conjures up private schools and country clubs. But my connections are exactly what the word means, people I’m connected to, in other words, my friends. Homer, now a surgeon at Sunnybrook, who is helping me navigate and understand the medical jargon and treatment plans, I met in grade 7 when he was a chess-club-joining, violin-playing eleven-year-old. Scott, now at the Toronto Star, was the partying, news editor charmer of the student paper where as an undergrad I was a features editor. I met Kathie, who organized a drive for me at Cornell University where she is a professor, when we were six years old.

  Is it because I’m a judge? Kate told me she was uncomfortable putting that fact in any of the outreach messages or posters. However, one of the South Asian lawyers helping to organize the drive told her that fact would get more people out because it was something people in the community were proud of—that one of them had attained a position of prominence—and would galvanize them. I think I’m the first South Asian family court judge in Ontario. And yet the “Principles of Judicial Conduct” I had hanging outside my office door state that it is inappropriate for judges to engage in fundraising activities because it would be an improper use of their considerable influence, and here I am asking not for money, but for blood!

  Is it because I’m the mother of two young children? To me this is my biggest hook because it is what I would be most moved by. So I guess you could say I “used” my children. The photo I give for all the drives (and everyone wants a photo) is one of me with my arms around Jack and Anna, who are both leaning into me and smiling winningly at the camera, with a backdrop of flowers in the Montreal Botanical Garden. I want to tug at heartstrings, I want people to think, Oh those beautiful children, how could they be left motherless?

  I used to love medical dramas on TV, like ER and later House. But I cared only about patients who had loved ones gathered at their bedsides. To me the tragedy was not death itself, because once you were dead there was no more suffering, there was nothing. The tragedy was in the heartache you left behind, because that would go on and on.

  Still I’m troubled. I fear that all I’m doing is rationalizing my privilege. My request is self-interested, period. I’m reaching out only because I desperately need a match. Would I be asking otherwise? No, because I had never even heard of stem cell transplants or the stem cell registry until I got sick. But still, it’s not like people are depositing their cheek swabs directly in my mailbox, I tell myself. All I’m asking is for more people to sign up on the registry. Not only is it a public Canadian registry, but it’s connected to a global registry. The people who sign up because of my plea could end up helping me or someone else anywhere in the world. And because of that I decide I don’t feel guilty about the media attention and all the drives my friends are organizing. I’m helping more people than just myself. And I find that comforting. If I don’t make it, I will at least have increased the chances of someone else surviving.

  At any given time almost a thousand people in Canada, and thousands more around the world, are desperate to find a stem cell match. I promise myself that if I make it, I will continue to campaign for people to get swabbed and on the registry. I won’t stop because I’m safe. Some countries in Europe have huge registries because of their opt-out system. They seek to swab everyone, and you actually have to say no, in order to stay off the registry. Germany’s population is only a little more than double Canada’s, and yet it has five and a half million people on its registry, eighteen times the number we have on ours. We should have that in Canada, instead of our current system of relying on individual pleas for donors. We should find a way to reach every possible donor. It could be something as simple as asking every student to give a cheek swab as they leave high school. Maybe that could be my calling. One day. When I am better.

  During my interview with Alisa, she asks me what in my life prepared me to face this ordeal. And my answer, at first, is nothing. Absolutely nothing. I have had a soft, easy life with no hardships whatsoever. While I have worked hard, now that I can no longer work at all, I see the ability to work hard as a gift, rather than a hardship. I’m desperate to get back to the job I loved so much. Friends tell me I’ll get through this because I’m strong. This is kind, but untrue. I’m probably the weakest person I know. I think maybe it’s gratitude that has prepared me. I have never taken for granted what I have, but have always been very grateful for it.

  It makes me think happiness is mostly a choice you make, not a state you’re in. I remember growing up and my parents referring to us as being “upper middle class.” I see now that of course we were not upper middle class, just ordinary middle class. But because my parents felt rich, they made me feel rich. In the children’s novel Kira, Kira the family falls apart when the older sister dies of cancer, the father has a meltdown at work and loses his job, and it all seems to go from bad to
worse. But then they hit a turning point when he realizes that they have a choice: They can choose to be a happy family.

  Chapter Eleven

  My interest in matchmaking ends gradually as the chemo starts to accumulate in my blood and I sink into myself. I was enjoying dissecting the recent breakup of one of my medical team members: What went wrong? Is there a chance they can get back together based on what she recently texted him? I’m flattered and pleased with my identity as relationship guru, as opposed to sad little cancer patient. But when the full effect of the chemo hits me, I start to feel uneasy and dreamlike. I feel like I belong more elsewhere than where I actually am. Like I’m a hummingbird, the only creature, according to North American legend, granted the ability to go back and forth between this world and the next. Like I can hover over both and be part of neither.

  The specially certified chemo nurses come in briskly each day, stripping off their regular blue gloves and putting on special yellow chemo gloves before they attach the bags to my IV pump. They then throw out the yellow gloves in a special trash can before exiting my room. Meanwhile, the drugs they can’t touch, even through a plastic bag and with special gloves, are traveling directly into my veins for seven hours each day. This treatment could kill me before the cancer gets a chance to.

  I’m so sad and so nauseous and so scared that I don’t have the mental energy to care about anyone else. I can barely muster up the energy to call Jack and Anna each night to hear about their day; I no longer have the strength to be embarrassed about my matchmaking attempts; I can no longer listen to my team member babble on about his failed relationship and so I selfishly pretend to be asleep every time he comes into my room.