Josh believes it’s worth “fighting” based on that 0.1 percent. I don’t agree. Why should I allow myself to be treated like a lab rat, poked and prodded, monitored, scrutinized, suffering who-the-hell-knows what side effects? Why should I diminish the quality of whatever time I have left with my children when the chance of success is so small? Why bother when the endgame is the same?
I’m tired. I’m so very, very tired, so tired that I don’t want to do anything at all, not “crazy” stuff or clinical trials. For those of you who don’t live with metastatic cancer, who haven’t undergone all the surgeries and treatments, can you possibly understand the depth of my fatigue—physical, emotional, and spiritual? I don’t think so. It’s the kind of exhaustion that tests not just any courage I have but also the tremendous love I have for my husband and children.
I’m tired of feeling the strain of living as normal a life as possible under the constant threat of death. Of combating the jealousy and anger upon seeing the grandmother who has the privilege of taking her grandson to school and the envy upon hearing another mother’s carefree laughter with her friends. Of feeling the hatred of the woman whom Josh will marry after I am gone, who will live in the home that I designed and have the honor of raising my beautiful children, who will hang her dresses in my closet, who will steal the life that should have been mine. Of feeling the sadness at the thought of Mia sitting in her weekly violin lesson without me there for her to glance at once in a while for reassurance and encouragement. Of worrying and planning and more worrying and more planning. This is the text of an email that I wrote to Mia’s violin teacher, a manifestation of my sadness, worry, and planning:
Hi A,
I think I told you at some point that I have metastatic cancer, incurable and likely terminal. When you told us this week about your violin teacher and how she got you through the first 7 years of your violin life before she died of cancer, it was obvious how much she meant to you and no doubt how much you meant to her. Anyhow, it got me thinking, so just bear with me as you read this.
While everyone tells me I need to be positive, I’m a realist and a planner. You are so young so probably some of what I say won’t resonate with you yet, but I will do my best to explain. What makes me the saddest about dying is the thought of Mia learning during her lessons and me not sitting right next to her, watching her. The thought of her performing on a bigger stage and me not being there in the front row to cheer her on breaks my heart into a million little pieces. The image of her practicing by herself without me there to push and yell and demand and hug and teach (not the violin but about life) both worries and saddens me. Who will and can replace me? Who can nurture her musically and otherwise as I can? The answer is no one. No one can possibly love my children as much as I do, not even their father. So the best thing I can do is to line up as many people as I can to be there for them in the different aspects of their lives. That’s what I want to talk to you about.
While Mia’s father is very musically talented, he works a lot and I don’t see him fulfilling the music role left empty by my death. What I’m asking of you is for you—as much as you are able—to take Mia under your wing, to look out for her musically, to guide her and push her when she needs it, to advise her in getting into music programs and, if/when the time comes, find a new teacher for her.
I know Mia has musical talent, how much I really don’t know. It doesn’t really matter to me how much talent she has. What matters is that she develops the talent she has. I don’t want it to go to waste. Plus, I think she really enjoys playing and likes to perform. She’s one of those people that keeps her feelings to herself, which I don’t think is a healthy coping mechanism. It is my hope that music becomes an emotional outlet for her, a way for her to deal with the grief from my loss and the other hardships that will inevitably come into her life.
How much you want to and can help Mia is of course up to you. I will understand if you can’t do much at all beyond the weekly lessons. But if you want to be more involved in her life and get to know us better, the invitation is always out there. We live right around the corner from the school. Mia likes you, and obviously you are good at relating to little girls.
So thanks for having taught Mia as much as you have (and me, too). You’ve no idea, but the lessons are a highlight of my week. I always wanted a musical education, but my parents were too poor to give me one. And thanks for reading all this and putting up with my emotional outburst.
It is because of my jealousy and hate and worry and love that I have threatened Josh with murder from the grave if he were to ever favor future children over our children, even monetarily. I made him promise that he would not move out of this apartment that I have spent so much time and energy renovating for my children because the Slutty Second Wife demands that, to banish all traces of me. A friend told me about a little boy who lost his mother to cancer at age one; subsequently, his father remarried, and now, four years later, that boy calls this woman Mom. That story made me cringe and incited hysteria.
As I write all this, I know how unhinged I sound. I’m crazy. Josh would tell you I was crazy to begin with and cancer has made me crazier.
Poor Josh has to put up with my hysterics, my anger, my sadness, my tears, my darkness. Josh is tired, too. He’s tired of living under this black cloud. And out of love for him, I want to die sooner rather than later. I want to set him and the children free. I want him to have a normal, happy life again. And no doubt, his family wants the same for him. I am a burden. I don’t want to be an embarrassment to him at family gatherings, me with my ravaged skin and body—oh, poor Josh, they must all think. It will be a lot better for him when my presence is gone and he has someone else with whom to share the rest of his life, someone who will help him heal and forget the pain.
So now you understand what I am wrestling with. Is it more courageous to continue or to stop? Is it more loving to leave or to stay? I still don’t know.
36
Hate
I used to not hate people. But now I hate people. Can you guess who I hate the most?
It isn’t the grandmother who has the privilege of taking her grandson to violin lesson, the one I always see when I come out of Mia’s lesson. No doubt that is a privilege she doesn’t even fully appreciate.
It isn’t even the old lady with a cane who criticized me for taking a seat at the front of the bus reserved for the disabled and thereby forcing a man hobbling down the aisle to take another seat a few feet away—I shut her up when I screamed at her that I have Stage IV cancer and yanked at the neck of my T-shirt to show her and everyone else on the bus the unmistakable bump on my chest under which lies my mediport. I wanted to scream something about my legal blindness, too, making me disabled on yet another level and entirely entitled to that seat in ways she could not possibly understand, and that she should go fuck herself. But the presence of my older daughter beside me stopped me. (My poor children. They have been so traumatized by me and no doubt will carry with them confusing and humiliating memories of their angry mother acting like a stark-raving lunatic on this and many other occasions. I hope they will understand that the rage was rooted in a deep love for them.)
Then there was the tall, well-dressed woman who made some snide comment at me when Chipper got away on his leash and therefore interfered with her self-absorbed rush along the broad sidewalk outside my building. I wanted to chase her down and punch her again and again and again, until all the rage inside me found an escape. I wanted to claw her eyes out. I wanted to strangle her to death. I still do. Criminal charges, imprisonment, life sentences, none of them matter in those moments of fury. But my children were with me, so I just let the incident pass. Even though I wanted to kill that woman, I don’t hate her the most, either.
Nor is it all the other mothers I know and don’t know who get to attend back-to-school nights and listen to the new teachers talk about homework routines,
all without worrying about who exactly is going to make sure their children do homework after they die and more broadly, about how the hell their children are not going to become totally fucked up in light of their mother’s death.
It isn’t even mothers who have been cured of Stage I or II or III cancer.
Don’t get me wrong—I hate all of these people to some degree, at least in the abstract. But the people I hate above all others are the mothers who were diagnosed with Stage IV cancer and who somehow were cured, who for some unknown reason escaped the death sentence. I find myself asking a God that never answers my questions—Why? Why them and not me? But that question seems inconsequential when I think of my children. I would sacrifice myself for my children a million times over. Are those women’s children somehow more deserving of a mother than mine are? My children are incredible little people. Mia is so smart and inquisitive and musically gifted. Isabelle is so compassionate and funny and graceful. If those mothers ever deigned to believe that their lives are more valuable than mine or that their children are more deserving of a mother than mine, I would indeed kill them in cold blood.
* * *
—
What I have written here is perhaps the darkest thing I have ever written, for I am writing about rage, hatred, and violence. I truly believe that such feelings are universal parts of our human experience, brought on by such mundane things as being a mother or living in a place like New York City, the negative by-products of our social interactions and innate tendencies, which are heightened and exacerbated by high-stress conditions like cancer. But such negativity is often unacknowledged because no one wants to talk about something so ugly and unflattering; no one wants to be uncomfortable, embarrassed, ashamed.
But I seem to have lost whatever social graces would have told me to be uncomfortable, embarrassed, or ashamed. I don’t care anymore, because I am dying. My oncologist pretty much told me so after the last scans in mid-September. The radiation-immunotherapy combination was a colossal failure. Growth everywhere—in the lungs, in the abdomen, in the pelvis. The worst scans I’ve ever had. He kept describing new and bigger tumors. It was so awful I couldn’t even bring myself to read the scan reports, I, who like to think I’m so smart and should read everything. Dr. A.C. said I have a year without treatment. Given that I’ve exhausted the first, second, and third lines of treatment, whatever options remain are not going to extend my life much beyond that. And there’s always the possibility that treatment, mostly experimental at this point, could make me so sick that it would in fact shorten my life.
Please spare me the platitudes like “Only God knows your expiration date” and “Doctors don’t know.” Doctors certainly can make a better-educated guess than I can based on their professional experience. And I also don’t want to hear the trite “We are all dying.”
For a week after the scans I moved through the world in a daze. How could I still be shocked by anything after three years of this shit? I wondered. The daze was worsened by sleep deprivation and intense abdominal and pelvic pain that was most certainly the ever-growing tumors making themselves felt. And yet, I still moved, even though my movements were clumsy.
How did I still manage to walk the dog and get the kids ready for school and sit there and oversee Mia’s violin practice? How did I go to a barbecue at Josh’s boss’s house and smile and act normal? How did I take my children to birthday parties and make Costco runs? How did I move us back into our home as we finished our months-long apartment combination project? How could I do any of this even as I felt the life inside of me getting smaller, as I slipped ever closer to death?
Instinct, I suppose. Muscle memory. A powerful sense of obligation. An immensely practical nature, most of all. After I left Dr. A.C.’s office, I called my sister to tell her the news. Without tears, I told her that as much as she had not wanted to talk about this, we had to start talking about “it” now, that she needed to prepare to become my children’s surrogate mother, that I would rather she be their surrogate mother over any random woman Josh married. She would need to be the one to make sure the kids did their homework and practiced their instruments; she would need to collect and present to Josh extracurricular activity and summer camp options; she would need to supervise the running of the household. Unspoken was the understanding that she would provide that female emotional support my children will desperately need. I told her that I had already determined a short list of friends (and mothers) who would support and help her (since she doesn’t have children of her own), women who would advise her as necessary. I told her that perhaps this was all meant to be, that her only sister dying will now afford her the opportunity to experience a unique brand of motherhood. As much as she hadn’t wanted to discuss any of this because she didn’t want me to die, she agreed.
We talked about how she could move closer (Queens seems too far), how she and my brother would divide the responsibility of caring for our aging parents, how she might possibly move into my apartment temporarily to ease the transition. If there is one thing about the family into which I was born that I am very proud of, it is that we are incredibly practical people. No matter how horrible and tragic something is, we always take care of what needs to be taken care of. There is no emotional withering, no debilitating depression. Our impoverished immigrant roots taught us survival skills that are fundamental to our very beings. This is an attitude, an approach, a worldview that I hope the girls, despite their comparatively privileged upbringing, will have somehow inherited from me.
Josh was devastated. Stop it, I thought. How is it possible to still feel devastated after three years of this, after receiving bad news time and time again? We comforted each other in the wee hours of the morning, after waking from our brief, exhausted slumber. I forced him to tell me his fears. How would he manage to be a single parent while also maintaining the career that means so much to him? Who could possibly run the household like I do? When should he stop working to be with me? I did my best to address all his fears. I’ve spent three years planning for my death. I have many contingency plans. Many lists in my head. Many things to write down. Many instructions to issue. If I could, I would handpick Josh’s second wife, too, but unfortunately, I haven’t gotten around to establishing that contingency plan yet.
I told Josh that I want to be cremated, my ashes to be spread in the Pacific Ocean. I decided on the Pacific Ocean while I stayed at my brother’s house this past summer, as I sat in his backyard staring down into the ocean that lies between the landmass where I was born and the one where I lived my improbable life. I told him I want my memorial service to be held at the church we’ve been going to since Mia demanded we start going over a year ago. I told him I want it to be held three months after I die; three months is enough time for people to make travel arrangements and soon enough to allow Josh and my family to grieve, and then I want them to move on afterward. I want him to ask Mia’s violin teacher to perform at the service. I told him who to ask to help with the planning of the service and showed him where old pictures of me can be found. He spent a weekend crying over those faded photographs, bemoaning the unfairness of it all.
I spent the weekend rearranging our chaotic stuff into our new, expanded closets, replacing our old dinnerware with the dishes I just bought, reorganizing spices, cleaning, planning, thinking, and planning some more.
When Dr. A.C. gave me that dim prognosis, I knew I wanted more than a year. I needed more time to plan, to live, to mother. My children need me for as many days as I can give them. Weeks of no chemotherapy had left me feeling pretty good, so I knew I could withstand more treatment.
And so I asked a friend to help me schedule an appointment for that coming week with a prominent GI oncologist in Washington, D.C. (Dr. M.), someone who had helped me with a fundraiser a couple years ago, but whom I had never seen as a patient. If I had gone through regular channels, I would have had to wait six weeks. I got an appointment for the coming
Thursday.
I called Memorial Sloan Kettering for an appointment with an oncologist (Dr. V.) I had seen a couple times before for second opinions. She is young and therefore not one of the big names at MSK, but I have always liked her and wanted above all else access to MSK’s clinical trials. I had already decided that whatever clinical trials I would do, I would not travel, not unless there was an amazingly promising trial. I wasn’t going to waste whatever valuable time I had left with my family traveling constantly for something that was highly unlikely to work. MSK is the leading cancer center in the country, and fortunately for me, it is only a thirty-five-minute subway ride away. Dr. V. had a last-minute cancellation just hours before I was to board a train for D.C. I took it.
Instinctively, I felt the need to obtain other opinions. Dr. A.C. was offering me Lonsurf and Stivarga, the last two drugs approved for colorectal cancer. Dr. V. identified those drugs, but she also offered me a spot in a clinical trial. It is a Phase II trial (meaning that the experimental drug has been tested for safety) involving a chemotherapy agent called SGI-110 that is administered in combination with irinotecan, a chemotherapy drug I’ve had lots of. Patients are randomized into two arms, one involving SGI-110 and irinotecan, and the other involving either Lonsurf or Stivarga (patient’s choice). Even if the patient is randomized into the latter arm, once Lonsurf or Stivarga fails, he or she is assigned to the other arm, so the patient receives the experimental drug sooner or later.
The next morning I saw Dr. M. Despite the unfamiliar environment, it was a relief to see him. He is such a kind man with a wonderful bedside manner, but he also knows what he’s talking about. He reassured me. First, he asked me how I was doing emotionally; he knew how I was inside by looking at the scans, but he wanted to know how I was doing in a deeper way. I told him that I was exhausted, that I was tired of making decisions, that I wanted someone I trusted to just tell me what to do.
The Unwinding of the Miracle Page 24
