Bitter
Just as my skin starts to peel off to reveal the fresh ink underneath—that wound is healed—my cousin Hallie is diagnosed with stage 4 breast cancer. She is only thirty-nine years old. Though I kept my game face as best I could, sitting with Hallie and her mother at these first medical appointments was a frightening reminder of my own cancer diagnosis and the absolute terror I felt in those early weeks.
Hallie had done everything right. Because her mom had had breast cancer, Hallie had her first baseline mammogram in her thirties. After her mammogram, when Hallie was thirty-eight, she received a letter: “We are pleased to inform you that your results are normal.” Her gynecologist’s office had called with the same news.
But, the radiologist had noted on a report that “the breasts are extremely dense which lowers the sensitivity to mammography.” That one sentence was never shared with Hallie. Her “normal” mammogram had missed a cancerous tumor, which had continued to grow.
My cousin was misdiagnosed and missed a crucial window of early detection.
Here are three things I want you to know about Hallie before I tell you about her cancer:
1. She renamed herself Hallie when she was eleven years old. Her “real” name is Leland. She is daring like that, even taking on a new name. (I hated my own name too, but it never occurred to me to rename myself.)
2. She is one of the smartest people I’ve ever met. She started collecting words when she was thirteen, when she read War and Peace and discovered the words hussar and bivouac. (Who reads Tolstoy at thirteen? My cousin Hallie.)
3. She is beautiful. She looks like a mermaid with long, wavy blond curls and eyes the color of the sea. Her cancer treatments would take away her hair, but they couldn’t take away her fierce intellect and adorable laugh. I wish I could describe how sweet her laugh is.
Hallie’s grandmother Rose and my grandmother Ruth were sisters. They were always very close, even living in the same condo complex in Florida when they were older. Hallie was like my taller, blonder little sister. Her green-blue eyes looked like Ruth’s and Rose’s eyes. I have brown eyes and always joked that I couldn’t believe we were all related. But Hallie and I shared a diagnosis, at remarkably young ages. Was that our mark of relationship?
Years after I was diagnosed but before Hallie was, Hallie’s mom, Lynda, was diagnosed with breast cancer when she was sixty-two, and Lynda’s younger sister Wendie was diagnosed when she was fifty-nine. When I was with Hallie at one of her early meetings with an oncologist, the same oncologist who had treated me, we drew our family tree. (I hate how genetic history is called pedigree, as if we were dogs in a show.) I was the first bad leaf on the tree, and then the other cancer leaves had sprouted. I’d always thought of family history as what came before. Now I saw that one bad leaf could signal future problems for the tree.
At that meeting the oncologist asked, “Has anyone in your family had ovarian cancer?”
Aunt Lynda said, “My mother did, but she was eighty-one years old.”
The oncologist shook her head. “A relative with ovarian cancer at any age is a risk factor.”
And as if this wasn’t overwhelming enough, the doctor also wanted to fill in the other side of Hallie’s family tree—her dad’s side—because there were significant instances of breast cancer on that side too.
The doctor stared straight at Hallie, Aunt Lynda, Aunt Wendie, and me. “This is a very compelling family history. It doesn’t matter what your genetic tests say. Especially with the ovarian cancer.”
I wanted to reach across the desk and grab the genetic chart she had just drawn. It wasn’t like I wanted to blame the messenger, but sometimes there’s no one else to blame. I’d rip the chart to shreds and throw the bits at the doctor, like snowflakes landing on her head. I wanted to tell her that my great-aunt Rose was the sweetest woman ever and that she had always served me cookies and called me “darling” and was so glamorous even in her robe and high-heeled kitten slippers. I wanted to tell this doctor that Aunt Lynda had won an Emmy for writing a soap opera that the doctor was probably addicted to, that Hallie could beat her at Scrabble any day, that Aunt Wendie had hung out at Studio 54 back in the day and had worn better outfits than Cher. This doctor knew only our defects; she didn’t know us, and that didn’t seem fair.
I started worrying more about my genes, feeling so weird that they were preprogrammed and that I had absolutely no control over them. I used to think that drinking green juice might protect me from possible future cancers, but juicing seemed totally out of this league, where fate made the decisions. And of course, I worried about Skye’s future, and I pictured her drawing her family pedigree one day: I’d be the bad leaf that her daughters and her daughters’ daughters would fret about. I’d cause worry for future generations because of my cancer. I wanted to pass along only good genes, like the laughter gene and the dance gene. Of course Skye would say I definitely didn’t have the dance gene, even though I do. After all, she is on a hip-hop team that wins platinum at state championships. “Where do you think you got those moves, Skye?” From your mother. “Where do you think you got your breast cancer risk, Skye?” From your mother.
By the time Hallie was diagnosed, the genetic-testing revolution had arrived, and I wanted to know if I had the breast cancer gene so that if I did I could have my other breast and my ovaries removed as a precaution. This new blood test analyzed DNA to find mutations in certain breast cancer susceptibility genes. In my test there was a strange mutation called P1238L, which was categorized as “potentially harmful.” Years later, Myriad Genetics, a diagnostic lab, would write to my doctor to tell her that the “potentially harmful” mutation had been reclassified as “not harmful.” But I wasn’t off the genetic hook yet: There was a newer, more advanced breast cancer gene sequencing that my doctor thought I should do because it was more sensitive than the old test. I had it done, and it didn’t show anything new. But then there came a newer test called BART that could show a DNA problem that might not have shown up on the earlier genetics tests. I did BART and there were no red flags.
It seemed like our family didn’t have “the gene.” Hallie had all the genetic tests done and hers were negative too. But it didn’t really matter what the genetic tests said because breast cancer had now shown up in two young women in our family.
At a famous New York City hospital where Hallie, Lynda, my mom, and I have come for a second opinion, the doctor explains Hallie’s diagnosis in more detail.
At first there was hope that even though the tumor was big, it hadn’t traveled anywhere else in her body. That was short-lived. The bone scan showed that it had traveled to her spine. The evidence was so tiny, almost invisible on the films. There was debate over how to proceed with her treatment. Some doctors suggested ignoring the hairline cancer on her spine, and treating her breast cancer as if it had not spread, as if she were curable. Others had said she was “treatable” but not “curable.” This is a sort of code-speak for cancer patients and oncologists, which I’d had to learn the hard way when they thought my cancer had metastasized to a lung lobe. “Treatable” is a way of saying they will keep trying treatments for managing the cancer, but there is no hope of a cure—buying more time but never truly getting your life back. Whether she was treatable or curable would determine the course of Hallie’s treatment. Hearing these words again reminded me of how unfair cancer is—how so much of it is bad luck.
This doctor has come highly recommended, and we are all leaning forward in our chairs to make sure we hear exactly what she has to say about Hallie’s prognosis.
“You are clearly in the stage four bucket.”
I can’t believe her choice of words. Bucket? She has to be kidding. Does she not know the phrase kick the bucket? There’s even a movie, The Bucket List, about two terminal patients. I hate the term bucket list. The visual of a dirty bucket holding a list of to-dos before dying is so depressing.
I am snapped back to reality by Hallie.
“But another doctor I saw thought chemo might work.” Hallie is challenging the doctor, and the doctor is getting more agitated.
“Doing chemo would be a Hail Mary now,” the doctor says.
“What is a Hail Mary?” my aunt asks. As Jews and non–football players, we don’t understand the term.
“It’s when you just throw the football into the air and hope for a miracle—when you have nothing else to do,” the doctor replies.
There is a stunned silence. I clench my teeth as hard as I can. I’ve never wanted to physically harm a cancer doctor—they are my heroes—but there is something evil about this woman.
I look over at Hallie. I wish for a moment that she was the one with all the power, delivering the news to the cancer doctor, and that my sweet cousin was cancer-free. I keep scowling at the doctor, as if I were in second grade, and I wonder what Hallie will do with her remaining time. I remember when I thought my cancer was going to kill me, and I thought of all the things I should probably do before I died. But despite having cancer, or maybe because of it, I never did sit down and make that list.
It gets even worse, if possible: Hallie says to the doctor, “I read that I can have a five percent chance of living.”
“It is more like one percent,” the doctor snaps back, staring directly into my cousin’s stunned eyes.
I try not to cry in front of Hallie that day in the hospital when she is put in the stage 4 bucket, and there’s a very clear end date—like an expiration date on a milk carton—stamped on her. When we leave the hospital, we walk across the street and order margaritas. We make a toast to life.
I need to believe in life. We are going back for Hawa’s final scan, to see if her cancer has returned. Her sister has flown in from Africa, and we are waiting for Hawa’s oncologist to walk into the room holding the film he will put on a white bright light to show us Hawa’s future.
It is so quiet in the room; we are all holding our breath. We hear the rustle of the film coming out of its paper holder. The film is glowing mysteriously.
“There is no evidence of disease. You are cured.”
We jump and scream and cry and hug and almost suffocate this distinguished and kind doctor, in his white coat, the three of us.
As Hawa is walking out of the hospital, she pauses.
“I need to help Hallie. Cancer survivors take care of each other.”
“Will you be scared?”
“No. You taught me to be strong, and now I can be strong for Hallie.”
Hallie is determined to live as long as she can. In fact, I’ve never seen her so determined and hopeful. Despite her dire diagnosis, she is planning for the long term, and buys a new apartment. Her life has taken on a certain “do it right now” quality. She makes her new apartment her dream place, spending hours picking wall colors and building in special bookcases to display her prized collection of books. She’s ready to find the man of her dreams too. She’s been engaged, broke it off, kissed some frogs, and she’s afraid that her diagnosis will scare off the dream man—but she flirts with the physical-therapy guy during sessions for her swollen arms. Hawa is determined to keep Hallie looking toward her future. She makes Hallie dress up and put her wig on before the cute physical therapist rings the doorbell.
“Hallie, where is your lipstick?” Hawa and Hallie crack up before Hallie answers the door.
She reaches a milestone and turns forty. In a packed bar, with her friends and family, she sings a Madonna song, “Ray of Light,” and dedicates it to her grandmother (on her dad’s side), who died of breast cancer. She is singing about pain, the pain of losing her grandmother to breast cancer, and also her tentative future. I can still see her singing that song, perfectly in key (Hallie attended LaGuardia High School of Music and Art and Performing Arts—the Fame school). It seems like she is singing to us about how much she wants to live. She looks sexy, fierce, and alive. The crowd goes crazy for her.
White hospital hallways are so much different from a rowdy bar. With each appointment she has for treatments, she is getting further away from the Madonna-singing bar girl. Soon Hallie is spending more time in the hospital than out of it. I try to be strong and not cry around her. I’ve made a rule for myself about not crying in front of her. But I hated it when people didn’t cry in front of me when I had cancer; I thought they didn’t care. Now I know that they didn’t want to make me sadder than I already was.
Going back to the cancer ward to see my cousin, I smell the sterility mixed with heartbreak, and I am so happy that I didn’t get the “HEALED” tattoo—because the shadow is back in my life. During one of my hospital visits, Hallie is told that the treatment isn’t working again. The nurse says, “Henry Ford had to keep trying, to get to Model T, and he had the entire alphabet behind him in failed cars. You have more options.” But we all know she is running out of options fast.
I bring Skye to visit her, and we are both scared when we walk in. Hallie is bald from her chemo and can’t speak because her throat has been radiated to shrink a tumor. The cancer is spreading faster than any doctor predicted. There is a huge burn mark on her neck that is red and painful looking. Skye is so poised; she gets water for Hallie and brings her tea.
Hallie whispers, “Skye, I can’t believe you’re with me today. You must have so many places you’d rather be with your friends. I remember when I was thirteen.”
We leave a little later, and Skye looks at me and says, “Mom, I think Hallie is going to make it.”
How can I pop Skye’s balloon of belief? In the elevator going down, I turn to my daughter. “I brought you here because I wanted you to see that I can’t leave it. Cancer will always be with me, Skye.” She nods and seems to understand perfectly, way beyond her thirteen years.
Every day of my life is a day outside the hospital. Yet being back inside is now more familiar, as if I’ve never left that world of pain. I feel like a traitor getting to walk out of the hospital, leaving my cousin so I can return to the other world.
Hallie is trying as hard as she can. I hate it when people say that patients “beat cancer.” Trust me, if anyone could “beat” cancer, it would be Hallie. If anyone could outsmart cancer, it would be Hallie. If anyone could out-charm cancer with her wit, it would be Hallie. She would sing another Madonna song that would make cancer weep and retreat.
Hallie was there with me at my chemo, and I want to be there for her. When I was first diagnosed, Hallie made me a mixtape and wrote on it, “You’re not a cancer survivor, you are a thriver!” So I am praying for a miracle. Like how I got pregnant and how Hawa lived. Hawa’s cancer is gone for now; her treatment has worked. But instead of thriving, Hallie keeps getting worse. And my old wound is fresh now with Hallie’s pain.
After one sixteen-hour surgery Hallie has to recover in the wound-healing unit, and when I visit her, everything is so quiet and there is white gauze everywhere.
Hawa has been helping Aunt Lynda care for Hallie during the endless hours in the hospital. She has brought fresh puree food she has made because she remembers how hard it is to swallow after throat radiation. She is guarding Hallie’s bed, making sure the nurses and doctors bring her pain medication whenever it is time for a new dose. I’m there with my mom and brother, in this alternate universe. It feels like we are on a space station. Darkness and high-tech machines beeping everywhere. I stare out the window at the Williamsburg Bridge, stare into the night where the city looks like a jewelry box. The traffic lights are green emeralds and red rubies; the white streetlights are diamonds. Hallie can’t wear the jewels—they are all in the world behind the glass, far away, outside her grasp. When I look at all the lights, I imagine how the world will continue the next day and people will go to restaurants, taste delicious food, ride in taxis, laugh, but she will be stuck in the hospital in pain.
I want to smash the window and connect those two worlds again for her. She’s trapped inside and can’t get back into the other world. I cry over her bed. She rustles a bit, but she doesn’t realize I am crying. Maybe if I don’t cry, we can both deny this is really happening.
After watching her sleep for an hour, my mom and brother and I go out to dinner. I hate leaving Hallie in the hospital. I want to stay there with her. Everyone in this restaurant seems so happy, oblivious to all the people in the world suffering from cancer treatments. I order champagne to make a toast for Hallie, but when it arrives I can’t even lift the flute. I just stare and watch the bubbles rise up and then pop on the surface. That’s how fast life happens. That’s how busy we all are until we realize it can all pop.
I put my head down on the table and start to wail and heave. I can’t pick up my head and face the inevitable: Hallie can’t ever get better. My mom and brother try to comfort me, but then they start sobbing too. When it was happening to me, I didn’t have to watch from the sidelines and feel so helpless; I was in there facing chemo and fighting it. I wish I could do chemo for Hallie. I want to take some of her pain away, but I can’t.
“I’ll never finish my documentary now,” Hallie tells me one day in the hospital. For almost two years she’s been working on a film about her father’s acting career: Jan Leighton: Man of 3,000 Faces. I know how badly she wanted to finish that documentary. She wanted to write other books, find a guy she loved, help support the peace process in the Middle East. But her time is running out.
“Before I die, I do want to pass this law that would make it mandatory for doctors to tell women with dense breasts that they need more testing than just a mammogram. There’s a piece of legislation now in Albany, but they haven’t been able to pass it. I’m going to testify, and I’m going to call every official who needs to vote on this.”
Hallie had heard about the legislation from a group called Are You Dense, founded by Dr. Nancy M. Cappello, who was diagnosed with advanced breast cancer despite a decade of normal mammograms. She had passed a law in Connecticut, and was spreading the word that similar legislation was stuck in committee in New York. Hallie starts a blog called Inform Women to keep everyone posted on the legislation’s progress:
Wednesday, May 30, 2012
Greetings. This is a blog about sausage making, as they sometimes call lawmaking. It’s actually about a particular sausage: bipartisan New York Bill S6769/A9586 (Breast Density Disclosure and Insurance) which is in the process of being both made and unmade in Albany. It’s a bipartisan bill requiring that women with dense breasts be notified by mammographers that their breasts are difficult to read by mammogram, and that they should discuss additional screening options with their doctors. Right now, women with dense breasts are not informed that they are in danger of misdiagnosis. Women like Joann Pushkin, whose cancer grew for five years undetected by mammogram. Some cold, hard facts: According to the American Cancer Society, in the United States, 40,000 to 45,000 women’s breast cancers are missed on mammograms every year primarily due to breast density.
The bill may never make it to the assembly floor. There is less than a month left in the legislative session, and it’s still stuck in committee, where lobbyists and legislators are quibbling over the language of the bill. Among them are people who would like to kill this bill without leaving fingerprints. They can do it by running out the clock. With all the procedural hurdles this sausage has to go through, it may not make it to the assembly floor. That’s why I started this blog. This sausage can only be cured with some sunlight. . . . There are villains in this story too. At the end of the month, we’ll know who the biggest villain is. The winner will get the “boob of the month” award from this blog.
Hallie has researched all the members supporting the bill, and those opposed. She is a fierce self-taught lobbyist. She travels to Albany to hold a press conference and e-mails her friends and families the information of all the lawmakers to call and write to about supporting the legislation.
Hallie tells me she knows she will die. I want to reassure her that she has more time, that she shouldn’t think about it. She is brave, though, and on a mission once she’s focused on what she has to do in her remaining time. Hallie’s bucket list is to get legislation passed and make sure this never happens again to another woman. When she grants interviews about the legislation, she always says, “This bill will not save my life, but it will save someone else’s.”
One day after I leave Hallie and the hospital, I decide to do some research because I probably should make a new, definitive bucket list. Her determination has reignited the questions for me: What do I want to do with my one life? What will truly make me happy? What will I regret if my cancer comes back? What will make me smile if I know I checked it off? What am I missing that will make my life feel even more worth living? Shouldn’t I have figured out by now exactly how I want to live my precious life? Shouldn’t I be telling everyone to live every moment like it was his or her last?
I should be a poster girl for bucket lists because I survived cancer. But I’m worried mine won’t be original or exciting enough. I’m worried it will feel trite. On the other hand, I’m so sick of seeing people jump out of planes just to cross “jump out of a plane” off their bucket lists. I mean, if you can die in a skydiving accident, what is the point of putting it on a list of things to do before you die? Doesn’t that defeat the point? I’ve heard people say they want to run a marathon before they die. Not to be dramatic, but I think I would rather die than run a marathon. I have asthma, and I am not an athletic girl at all. Or, again, I might die while running it, only to defeat the purpose of the bucket list. The same goes for running with bulls in Spain.
There is one sport I love, and to be perfectly honest, I have only one thing on my bucket list aside from living: shopping. When I was going through chemo, I so badly wanted an adult Make-A-Wish that would pay my credit card bills. But shopping feels shallow now. I need important things on my list; this is life and death.
I decide that I would rather keep Hallie’s legislation goal and my list in fancy purses, instead of in buckets. It seems so much more dignified and less dire. Instead of gross buckets used for cleaning dirty floors, our “purse lists” would be pretty, sprayed with a favorite perfume. I do some research. There is a website to help me plan and track my very own list, with ten thousand suggestions. The problem: None seems important enough to be part of my purse list:
Eat bull testicles.
Be in a music video.
Ride an ostrich.
Meet Oprah.
Hold a huge spider.
Shave a coconut.
Float in the Dead Sea.
Dive with sharks.
Go grape stomping.
Have a wild deer eat out of your hand.
Eat kangaroo meat.
Okay, I need to stop. There are too many strange animals here. Nothing is rising to the level of an “I must do this before I die” feeling, except meet Oprah.
Maybe my list isn’t very daring, but the “shave a coconut” suggestion is making me feel more confident about my hopes and dreams. I just want to live now and get to keep everything I got after cancer. My kids were on my purse list before. Is that enough? Here’s my list:
Stay alive.
Never go through chemo again.
Live long enough to see a cure for cancer, but until then, keep Hallie and Hawa and everyone sick with cancer alive.
Watching Hallie get through her treatments with such courage shames me. I need to take more chances, bigger chances, live as if each breath could be my last. The ante is so high, and for some reason I’m not rising to the challenge. I don’t want to ride an ostrich; I don’t want to stomp grapes. I can’t think of anything grand enough to prove how much I want to live. I’m having a midlife crisis, and it feels wrong. I have lived long enough to start taking life a bit for granted again, and life is losing its luster. I am alive, but not alive enough. I want to fall in love with life again, and remember that it is a present to unwrap.