I flash back to when I was pregnant with my daughters, gazing at sonogram images with my obstetrician. Here are your insides, I think. Here is your baby. Here is your cancer. Here is your life, changing dramatically just beneath the surface.
“Gosh,” I say. “That’s astonishing.”
“Yeah,” he says with a grin. “It’s a lot more fun when it works.” I look at the monitor. Yeah, it’s just about the best fun ever.
February 2012
Goddamn it, I cannot do this. I just wanted a nice time out with my kid to see my hero, to show her the person whose songs I’m always poorly singing along with in the kitchen while I’m making dinner. I wanted to be non–cancer treatment mom for just a night.
We were going to see Debbie Harry. Of all the rock-and-roll heroes I’ve had in my life, she’s my number one. Tough yet glamorous. New-wave goddess. Disco queen. Rap innovator. My Jersey homegirl. And tonight, she’s doing a benefit show for Lucy’s public school, performing with the school band. Living in New York City is a crapshoot, but the cancer hospitals are pretty sweet, and sometimes Debbie Harry steps in to sing for your kids. So there’s that.
This afternoon I had picked up Bea from school uptown, and Jeff had picked up Lucy from school downtown. The plan had been that we’d meet up at the venue and do the switcheroo—I’d hand Bea off to Jeff, and then Lucy and I would go to the show together. But now, on the subway to 42nd Street, I know something is wrong. I am moving forward, but I am somehow watching Times Square slip farther and farther away from me, like I’m being pulled backward through a tunnel. Everything is getting smaller and more claustrophobic at the same time. By the time I get to the venue, I feel like I can barely stand up. It’s the treatment. A fairly minor side effect, this occasional and sudden clobbered feeling, but it’s still one to be reckoned with when it hits.
Jeff and Lucy wave when they see us approach, and then I see their expressions wince in unison as they look at me. They can recognize it now. I hate seeing that look on them, that troubled anxiety. I hate being this weak, out-of-control person who’s okay one minute and then a mess the next. I hate that I have to work so hard to hold it together, and sometimes I still cannot hold it together anyway. There was that time before The Muppet Movie that I’d almost fainted on the A train. That time at the library with Bea, when the security guard had to help me down the stairs. The school party, when I’d had to leave abruptly because I was so short of breath. This is what winning at cancer looks like. And as I collapse into a taxi and take Bea all the way back home, I think that sometimes it pisses me off.
A few nights later, I am walking down Carmine Street on a Tuesday evening to meet up with Jeff and the girls at Noodle Bar before Gilda’s Club. I have another treatment coming this week, and I am almost looking forward to it. That’s how much I appreciate a day to do little more than sit in a reclining chair—and also how strangely attached I have become to the chocolate pudding I get with my lunch there. The kids, meanwhile, have been spending winter school break week at Gilda’s Club’s Camp Sparkle, a free day camp for the Noogies. I understand there may have been a trip to the wax museum today.
I’m almost at the restaurant when the phone rings. It’s Emily, the facilitator from the children’s group. “I don’t know if you heard,” she says, “but Cassandra died this weekend.”
Cassandra had not been back at group since the night I got my big news, but I never thought she was gone for good. I thought she was tired, or bored. I thought she’d be back. I didn’t even think it; I assumed it without concern or question, even when the increasing frailty was obvious. Because although it is one thing for grandfathers who are pushing 80 to die of cancer, I still don’t want to believe that mothers of young children die of it too. I still don’t want to believe it can happen to my friends. I don’t want to believe that the woman who held my hand that night last month, who looked at me with such love and light and generosity in her eyes, was dying then. That I will never ever see those green eyes or hear that sarcastic honk of a laugh again.
“It happened quickly,” she says. “Hugo said he saw her at chemo last week. But then she had to go into the hospital Friday, and she died Sunday. We’re going to talk about it at Noogieland tonight. I wanted to tell you ahead of time so you can prepare Lucy and Bea. I know how much they love Zeke and Mo.”
“We all do,” I say.
I am sobbing when I walk into the restaurant. I park myself on a stool next to the family, in front of a bowl of noodle soup already waiting for me. I can barely croak out the words. “Cass died,” I say. “Stupid cancer. Stupid stupid stupid.”
Jeff and the girls instinctively dismount from their stools to wrap their arms around me. They barely knew Cassandra, so they don’t cry They’re pained not at the loss of her but at my grief over it. I spoon noodles into my mouth, not because I’m hungry but because there is a bowl of soup in front of me so I’m supposed to eat it, and I honestly don’t know anything else in the world at this moment. “Dammit,” I mutter. “Goddamnit,” I say, as large, salty tears drip into the bowl.
How is it possible to be so gutted by the loss of someone I knew such a short time? Yet when I think of Cassandra, I think of a phrase I heard long ago—a friend of the road. It’s the companion you make in your journeys, the person you cling to in strange terrain, when the traveler next to you is your one constant. Your fellow adventurer. Jill and Debbie were my friends of the road a long time ago, when we met back in college. Laura was my friend of the road. I met her on an airplane ride to Prague. Becky was my friend of the road. I met her in a childbirth class. Cassandra was my friend of the road in cancer. She made this strange and harsh landscape better. Now my friend is gone, and the road seems longer and lonelier.
When I walk into the meeting room for group, I can tell my other friends don’t know yet. I got the call ahead of time so I could tell the kids, could explain to them why their buddies Zeke and Mo aren’t down in Noogieland tonight. The regulars have all filed in, and I take my usual place on the couch. Marlena will most likely make the announcement before we start. Then a new woman walks in. She is roughly my age, whippet thin and sporting a G.I. Jane haircut that immediately telegraphs: recently ended chemo. I stifle a gasp as she parks in Cassandra’s place. Hugo and Isabel shift uncomfortably, anticipating Cassandra’s inevitable wrath should she walk in and find her space occupied. But she’s not coming. She is never coming again. I just don’t want anyone else in her seat yet. I reach out my hand to the woman and introduce myself. I wonder if the rest of the group can tell I’ve been crying.
“I’m Jessica,” she says. “I’m just coming back from ovarian cancer.” She lives in Boerum Hill, in Brooklyn. She was diagnosed last May at Stage 3c. She finished chemo in November and recently started on Avastin, and now she’s coming here because, she tells me, “I have my biological maintenance, and now this is my psychosocial maintenance. My daughter, Mina, is starting Noogieland tonight too.”
I know what Cassandra would tell her, but she’s not here, so it’s up to me now. “She’ll love it,” I say. “If my kids don’t wear her out.”
Then the clock sweeps past the number six and our group time officially begins, and Marlena says she has something to tell us before we start. These little moments are so unreal, I think, the ones right before the bomb goes off. And then tissues are reached for. A sheet containing information about the memorial is passed around. Jessica looks bewildered and slightly horrified. This is what you get when you join a cancer club. Sometimes, shit gets real right away.
Afterward, a shell-shocked–looking Jessica and her bubbly seven-year-old daughter, Mina, walk to the subway with Jeff and the girls and me. As the girls run ahead down the street, I ask her, “Are you okay? That was a rough one to have as an intro meeting.”
“I was a little rattled by that,” she admits. “Frankly, tonight my primary concern was my daughter going into Noogieland and what it’d be like for her. When she heard about Gilda’s, she said, �
�You mean there are other kids whose parents have cancer? This is like the first day of school! Maybe I’ll find a new best friend!’ But yeah, when I saw people crying I thought, Does this happen every week?”
“It doesn’t, I promise,” I say, “but it does happen. I had someone in my group die in the first month. Jeff, I think you had a death the first night, didn’t you? I don’t know what I expected. I guess I thought, I’m going to go someplace I can talk about my feelings, and then I learned that yes, I will, but guess what? We all have cancer.”
“The good thing is that there’s safety in numbers,” she says. “But the horror is that not everyone is going to make it, and we’re going to have to live through that.” That’s what we do when we outlive our friends. We will cry and we will feel relieved and we will feel guilty too. And that’s how we’ll get through it.
CHAPTER 19
Side Effects
March 2012
The city is turning green early this year—winter had been so warm and mild, so damn near snowless—it couldn’t resist bursting into color well before the official first day of spring. I lived to see the cherry blossoms after all. Cassandra’s boys have now left the children’s group. On their last night, the kids and Emily threw a going-away party for them. There was cake, and the kids made cards and sang songs and played games. It was so sweet and warm and joyful that every time I think about that going-away party—which is almost daily—I feel like my heart’s being smashed to pieces. The boys are off somewhere else now, playing soccer and greeting the spring. Their first spring without their mother.
I’m here today at Memorial for another set of scans. They call my name and I head back to the women’s waiting area to change. I surrender my clothes and walk past tiny examination rooms filled with snugly wrapped sick people. “Would you like a warm blanket?” the nurse says, proffering it, along with a stress ball, as she gestures to my chair. Don’t mind if I do!
I settle in as she tries to jab a long needle into a vein in my right arm. “There’s nothing there,” she says, puzzled. Her face is furrowed with concern. “Can you squeeze the ball again, my love?”
I have known her about a minute, but, okay, I’ll be her love. I take a quick glance at her name tag: Marie. I’ll try to make my broken veins behave for you, Marie, but they were uncooperative, stingy little guys even before the cancer. The few IVs and blood draws I had in my old life were almost always punctuated by frustrated mutterings from the phlebotomist du jour. I swear to God, if I ever decide to become a junkie, I am totally sticking to smoking my heroin.
Now, however, my veins have achieved a whole new level of reluctance. Because of the trial, I have to come in every week for either monitoring or treatment. The nurses take alarming amounts of blood—dozens of vials at a time. I’ve been jabbed in a variety of exciting locations about my person. The crooks of both elbows. The middle of my forearms. The backs of my hands. Once, for a particularly memorable test of lung function, the artery in my wrist. My veins have been tapped and sapped on a more consistent, unrelenting basis than a keg at the end of Greek Week, and they are becoming hardened and blown out. Sometimes, I imagine Dracula stealing into my bedroom on a moonless night, slowly lowering his mouth onto my neck, and quickly pulling away with a disgusted “This is BULLSHIT.”
Marie reties the piece of tubing around my left bicep this time, and I give the stress ball firm rhythmic squeezes as she firmly smacks the crook of my elbow, searching for a point of entry. Beads of sweat are forming on Marie’s forehead now. She pushes the needle in and begins rooting around under the skin. I gasp in surprise at the sharp, clean pain as a tear spontaneously slides down my face. Marie looks horrified.
“I’ve been doing this for 25 years,” she says, “and you’re a tough one, my love. I’m so sorry, but I have to stop.” She pitches unsteadily forward toward the sink as she adds, “I’m having a hot flash.” She places a paper towel under a stream of water, and dabs at her neck and forehead. Apparently, I’ve just given my nurse menopause. “Would you like one too?” she offers, but I decline. She composes herself and asks, “Do you mind if we try it in your hand?” I look away as I feel the needle go in. I always thought “You can’t get blood from a stone” was a figure of speech. I am a stone.
Marie leads me now to the CT scan tube as she shrouds my warm blanket around me like I’m the James Brown of cancer, delivering a bravura performance. I lie on the table. “Take a deep breath,” an unseen voice commands. Seven seconds later it directs, “Let it out.” Easy for her to say. After a few more times like this, the technician comes in and adjusts my IV. A metallic rush of saline floods my mouth and an icy charge shoots straight up through the vein in my arm. Then there it is. The warm, pissed-in-my-pants feeling strikes below. It happens every time, and every time I am positive I really have wet myself. It is the most mortifying conceivable possibility since I pooped a little on the bed somewhere in the throes of my first childbirth.
“You’re done,” the technician says. “Swing your legs around to the left and we’ll help you off.”
There’s no puddle on the table. There never is. I still have a year and a half of treatment to go.
Afterward, trembling with chills, I go around the corner to cup my hands around an oversize bowl of ramen, and absently poke the yolk of the egg that floats on top. My dessert is a sweet jewel of mochi ice cream. I am strangely touched by it, feel oddly nurtured, as if the weird dollop of whipped cream on a lettuce leaf was meant as comfort just for me, an offering from my surrogate Japanese mother. I feel fortified and in control. An hour later I am walking back toward the subway when Dr. Wolchok calls to say I’m still clear. I am six months cancer free. And when you’re on a virtually untested treatment protocol, it’s still quite a novelty.
In some ways, I did get the good kind of cancer after all. I realize it when I am talking to James Allison on a summer day, right near the anniversary of my diagnosis, about why melanoma has been such a source of interest to researchers. I’d assumed it was because, as Nils Lonberg puts it, “There were no effective treatments for melanoma, so the immunotherapists were allowed to play in that little area. They weren’t crowded out by the nonimmunotherapists, because there was just nothing there. We were given the playground that nobody else wanted to play in. We were dismissed. You would not believe it. It was terrible. At conferences we had the tiniest rooms.” But Dr. Allison offers me another reason. “You work with melanoma because it’s accessible. It’s a bad disease,” he says. “It has many mutations. People want to deal with it because it’s so bad. It’s rapidly fatal.”
It’s a vicious, unpredictable, and often swift-moving disease, and that makes it challenging to treat. It historically responds better to immune system–based treatments than other cancers have. And also, though Allison doesn’t come out and say it, if a treatment for it isn’t working, you’re going to find out pretty quickly. Because it’s rapidly fatal. That’s why when he tells me this, I start to cry. My horrible bad luck was my miraculous good fortune. I got the cancer that was intriguing to a bunch of geniuses, and I got it at exactly the right time.
That night Jeff and I are in the kitchen making dinner and talking stealthily about the upcoming holiday and what the Easter Bunny still needs to buy for the children’s baskets, when Bea walks in crying. “What is it, baby?” Jeff asks.
The girls know I had my scans today, and I told them everything was clear. But I can understand they might need their mom to say it a few more times.
“Please don’t whisper,” she pleads. “It makes me think Mommy has cancer again. You two whisper when Mama has cancer. I used to think,” she adds, “whenever I heard you and Daddy going hiss hiss hiss in the other room it meant that you must be planning a surprise for us. I didn’t know you could be talking about something bad. But now I know.”
“Yeah, guys,” Lucy hollers in from the living room. “When your mom’s had cancer twice it’s not that fun to hear your parents being all secretive in the
other room.” Lately she will randomly ask me how my day was, and when I say, “Fine,” she’ll press the question further. “Are you really fine? Is everything okay? You promise you’ll tell me if something is wrong?” she asks, and I tell her yes to everything and tell her again when she asks again.
Lucy comes in to the kitchen now and puts her arms around me. She is teary-eyed. “Last week after Gilda’s, I was going to bed and it hit me how serious this was. Other people’s parents are really sick, and I started to realize what could have happened to you and got scared.” I look at Bea’s eight-year-old face, still so full of trust, and Lucy’s, so full of worry. We all lose innocence along the way. We all learn that not all surprises are happy ones. But I wish my babies had been able to believe it just a little longer.
CHAPTER 20
It’s Not a Sprint
August 2012
The subway car is jam-packed, and at least one person on it has not showered in recent memory. Outside, it’s a lovely summer day, but I’m off to spend it in treatment. Normally I prefer to do treatment days alone. They are long and often tedious, and I like to spend them reading and watching movies and not having to make conversation in between the blood draws and having drugs shot into my veins. But now, Jeff has taken a day off from work to come along with me today to meet my medical team (and, I imagine, get in on the free Shasta). He wants to see for himself what my experience is.
Refreshingly, unlike last summer and the summer before, I don’t have cancer. In honor of that achievement, I’m lately training for the New York City Marathon, as a fundraising effort with the Gilda’s Club team. My first marathon would have been a physical challenge even if I hadn’t been in a clinical trial, but training through the swampy city summer has been hard-core, especially the treatment weeks, when the drugs wipe me out. I’ve had some bronchial issues and shortness of breath, so I have had to accept that I won’t finish the race quickly. Doing it at all is what’s important. I need to be something other than that patient in that clinical trial. I need to prove to myself that I can be something after disease I hadn’t been before it. I’m six months cancer free, and I’m trying to figure out who I am these days. Trying to understand all the surprisingly new baggage that my cancer still brings to me, even after it’s ostensibly gone.
A Series of Catastrophes and Miracles Page 21