This is what cancer does: it makes your body unknown to you, an alient presence dragging 50lb weights on each ankle and around your neck. You are exhausted, so exhausted physically and mentally your brain can’t send proper signals to get your unresponsive limbs moving. One time, for three days, you couldn’t even wash your face because it was too much effort to lift your arms. When you couldn’t stand your own smell anymore you tried to take a shower. It wasn’t your own body odor you were smelling, it was the drugs you’d been infused with: TCHP, Taxotere, Carboplatin, Herceptin, Perjeta. They were seeping through your skin, through every orifice and the metallic medicinal smell was making you as nauseous as the drugs were. You turned on the shower but the weight of the water pushed you against the shower wall and you struggled to turn the water off. You sat soaking wet on the side of the bathtub until your spouse came to check on you.
“Honey, are you ok?” you heard her ask from the bedroom. When you didn’t answer she rushed in to the bathroom, saw the puddles of water at your feet, grabbed a towel and started drying you off. “You scared me when you didn’t answer,” she told you as she was drying your back. You knew she meant she thought you were dead.
You now spend hours on the internet trying to get more information about cancer, how you could have gotten it, what your chances are, but once you start reading you close your laptop because you don’t really want to know that the survival rate is only 70% five years later for your late Stage 3A aggressive breast cancer. What about 10 years or 20 years you ask, but nobody has those statistics. You don’t want to think in terms of surviving only five years. You don’t want to think that there is a 30% chance you could be dead before the five years are up. You look around your house in Santa Fe, the one you and your spouse bought for retirement that you don’t live in full time yet and you know that in five years she may not be ready to stop working. You want time here together when she retires, time to build a roof deck so you can sit and watch the sun set on the Sangre de Christos every night.
You’ve read all the other statistics about who gets breast cancer, the two most likely being you’re a woman and you’re aging. 77% of the women diagnosed with breast cancer are over age 50. Since when did age 50 mean you were aging, you wonder. Women who’ve never had children, who start their menses before age 12, who took oral contraceptives and who do hormone replacement therapy are at risk. Women who are overweight, drink excessive amounts of alcohol, who are physically inactive and exposed to environmental pollutants are at risk. You fit some of the categories but you never took hormone replacement therapy, you don’t drink excessive amounts of alcohol and even though you are overweight you are physically active. Back when you thought you were straight, you took birth control pills for five years. You’ve never smoked. Ever. In your mind only people who smoke get cancer, people who won’t or can’t stop smoking and take drags on their cigarettes from a hole in their neck while they’re hooked up to oxygen.
Cancer. This cannot be your life. This is not your life. This will not be your life. You do not want to understand what these medical terms mean, do not want to become comfortable with spouting out breast cancer vocabulary and treatment options, do not want to know that once your treatments are over the cancer could come back. Once this is all over even if you’re told you are cancer free, it’s only for the moment, that place in time, that snapshot, not forever. You want forever.
You do not want to admit that living in Shanghai created a perfect storm. “We all have cancer cells in our bodies,” one of your doctors told you during the diagnosis period, then went on to say, “We just can’t predict when they will explode and start replicating.” You were like a four year old asking, “Why? Why? Why do I have cancer?” He went on to say that you had probably had cancer for seven or eight years before you were diagnosed which puts you squarely in Shanghai when the cells began to explode and replicate without you knowing it. Seven or eight years of nothing showing up on any mammogram or ultrasound, seven or eight years of no lumps felt by you during self exams or any doctor during that time. When you asked the doctor if China gave you cancer, he answered, “We can’t say definitely, but probably. We know that environmental factors play an increasing role in contracting breast cancer.” Every other doctor you saw–two oncologists, one women’s cancer specialist and one radiation oncologist–had a variation of the same answer. One of the most difficult things you have had to deal with since being diagnosed is accepting that your cancer started silently chomping away on your healthy cells in Shanghai, the city where you feel more at home than anywhere in the world, the city where your heart continues to live.
You never felt more alive than you did when you were living in Shanghai. From the minute you landed, you got Shanghai and Shanghai got you. Your spouse’s mother, who is Chinese tells you, “Nancy, you are more Chinese than I am. You must have been Chinese in a previous life.”
Xiao Bin, your friend who you call didi, little brother, who is more like a brother to you than your own biological brother, tells you, “Nancy, I think our ancestors knew each other.” He understands your roots run deep in Shanghai, maybe deeper than his.
Shanghai is like the Wild, Wild East. If you are good, you can hang out a shingle and people will come. You brought your writing and teaching experience with you and soon you had more students, more of a writing life than you had anywhere else you’ve ever lived.
Now Shanghai may be killing you.
As the cancer devours the good cells and eats away at your once healthy body, the life you once lived—always looking out, looking up and looking ahead—becomes stiff, stalled and inward facing. You are constantly wondering what is actually going on in your body, what is happening inside your right breast. How did this happen? Your breasts used to be source of pride, of delight. When you were young and one of your sisters called you fatso, you told her I’d rather be a fatso than a flatso. You were glad you took after your mother, breast wise, not after your father like your sisters do.
No matter how much weight you gained over the years, your spouse did not care because it meant your breasts became bigger in proportion. The more weight, the bigger the breasts for her to play with and love. When you would say, “I need to lose weight,” your spouse would say, “Oh no you don’t, then your breasts will shrink,” and take one of your breasts in her mouth for emphasis. You loved her for that and she made you love your breasts even more. Now, you hate your breasts, especially the right one. It gave you cancer.
You stand in front of the mirror and look at your naked body, your right breast that is now smaller than your left one and bruised from the surgery. The areola around your nipple is yellowish green, not brown. The right side of your breast is purple and green and yellow where it is still swollen. You are grateful your surgeon is brilliant and has pioneered techniques to reduce the size of incisions, to minimize pain, and hasten recovery, but all you see are the scars, the disfigured breast and the physical evidence that your life is not the same anymore and never will be. The scars are cleanly cut, but they are there in places that were smooth and unblemished before. The surgeon cut around the areola right at the point where it ends so it wouldn’t be too noticeable but the scar is what you notice when you look in the mirror. There’s another two-inch scar above that one that makes your breast lumpy and dimpled. Even though it’s smaller than your left breast, it is heavier and it hurts. The nerves are still reattaching and every once in a while you get sharp pains that make you cry out in the check out line at Whole Foods or while you are getting a manicure.
Cancer is always there, lurking—in your body, in the back and front of your mind, waiting to pounce and replicate. You remember how you loved to play Pac-Man even though you were horrible at it and rarely won. You could never navigate the maze properly and Pac-Man rarely ate all the pellets before the goblins got him. You imagine that your body is a Pac-Man game now and Pac-Man can’t eat the cancer cells fast enough before the goblin cancer takes over and destroys you. Faster, faster you tell Pac-Man, but he keeps bumping into the closed walls of the maze while the goblins speed up and devour you. You wonder if you will be as bad at defeating cancer as you were at defeating the goblins and you begin to believe that your inability to defeat the goblins is a precursor to your inability to survive cancer. If only you’d been better at Pac-Man.
You remember one of your oncologists telling you, “If you had come to us this time next year you would have been in bad shape.”
“Like what kind of bad shape?” you asked her. “Could you have saved me?” You could not bring yourself to ask, “Would I have been dead?”
“I don’t know,” she said and held your gaze.
Cancer. Cancer. Cancer. It rolls around in your brain but rarely off your tongue. Not only do you have breast cancer, you have precancerous cells in your cervix. You are told you should have more surgery, have everything taken out—your cervix, your ovaries and your fallopian tubes. There is a 30% chance you could develop ovarian or cervical cancer if you don’t get them removed. Those odds are too high, the surgeon who is dealing with that part of your body tells you. You wonder why those odds are too high but a 30% chance of your breast cancer coming back is not.
You don’t want to be part of this cancer club, don’t want to bond with people in the infusion room. You’ve had infusions in Albuquerque, Los Angeles and Santa Fe and you hate being in every one of those infusion rooms. They’re all the same except Los Angeles where there is a preponderance of people talking loudly on their cellphones trying to make movie industry deals. The nurses run to two extremes—either excessively perky or excessively crabby. The patients run to two extremes—either excessively friendly and chatty or excessively quiet. You hope each time that you’ll be seated next to the quiet patients who will leave you alone. As soon as you sit down you pull out your iPad and start playing solitaire hoping that the chatty ones next to you take the hint and leave you alone. It doesn’t work, they never take the hint. They always want to talk. About themselves and their cancer. You don’t want to know about their cancer. You don’t even want to know about your own cancer. You smile, give monosyllabic answers and try not to make eye contact. You hope another one who wants to talk will come in and sit on their other side so they’ll leave you alone. You don’t want to bond with these people in the infusion room. You don’t want to be there, don’t want to make new friends. Why should you be friends with someone just because you have cancer in common? You’re not friends with everyone who’s gay, everyone who’s White, every one who’s lived in Shanghai, every woman. Cancer is not, nor will it ever be, your social life you want to tell them. There’s nothing sociable about it. It’s unsociable, a hostile takeover.
You watch the volunteers in the infusion room, the ones who pass out the pillows, the hot blankets, get you water or juice and bring you snacks. They have all had cancer and are grateful they were saved so they come back to help people like you. You wonder how they do it, how they can stand to be back in that room. They are so sincere and kind when they ask you, “Can I get you a warm blanket?” and so gentle when they cover you with it. You know that when your infusions are over, you will never set foot in an infusion room again. Unless the cancer comes back, and, that, you don’t want to think about.
For the first time in your life you can truly say, I don’t deserve you. Leave me the fuck alone. You’ve always believed you’ve gotten what you deserved, gotten who you deserved in your life because you came from nothing, from people who never owned a house, who kept getting evicted for not paying rent, who didn’t go to college and would have been ok with you being a waitress for the rest of your life, and you’ve worked your ass off to have what you have, do what you do, and live your life the way you want to. You don’t deserve cancer. You used to think smokers deserved it, but you don’t even believe that anymore.
This is what chemo does: it makes you nauseous, makes you puke, makes you feel like you are spending your days crawling slowly through gooey, slippery gunk. It makes you constipated, gives you diarrhea, gives you unexplained rashes and makes every little task seem huge. Even the simplest things—walking to the mailbox, putting a dish in the dishwasher, getting undressed—you don’t feel strong enough to do. It makes time move slower than you ever thought possible, makes your brain morph into mush. You cannot get your words out. You, who prides yourself on your vocabulary, on your ability to communicate, cannot remember words or people’s names. You can’t hold a conversation because it’s too much effort to listen and think. When friends call, you make your spouse answer the phone and talk to them because you just can’t do it. Chemo makes you wonder what you do with your time. You can’t read, you can’t write, you can’t think, you can’t concentrate.
Chemo makes you wonder if the poison you are mainlining is worse than the cancer itself. It makes your toenails and your fingernails fall off, one by one, bit by bit. First the big toenails start to separate from your skin. They hurt worse than ingrown toenails do. At night when the sheet and light blanket hit your big toenails the wrong way you scream in pain. Soon the top half starts coming loose and you rip it off. Then the bottom half slowly disengages from the skin and comes off. Afterwards you are scratching the middle toe on your left foot and the nail comes off in your hand. Your thumbnails do the same thing your big toenails did. Over a two-month period, slowly, one by one, you lose all your fingernails and toenails.
Before your nails fall off your hair falls out. You start noticing more and more hair in your brush each time you use it. Soon clumps of hair are coming out in your hands when you wash your hair. You try to disguise how your hair is thinning but there’s no disguising it so you ask a friend to come over with her clippers and shave your head. Afterwards you don’t go out of the house for four days. You don’t want anyone to see you. When you do venture out you wear a Yankees cap on your baldhead. People give knowing nods and glances, the secret club of cancer and chemo survivors, the club that reminds you of that old Groucho Marx joke: I wouldn’t want to join any club that would have me as a member. After the hair on your head falls out your eyelashes and your eyebrows start coming off, then your pubic hair. The hair on your legs and underarms doesn’t grow back for three months after you shave it right before your second chemo.
You sit in the lounge chair all day and night, the one you had to buy because your body hurt so much you couldn’t get comfortable on the couch, in your bed, or in the armchair, the red leather lounge chair you bought the week after your first chemo before your hair started falling out. You and your spouse went to the furniture store and you sat on each of the lounge chairs that were lined up like birds on a telephone wire. You picked this one because it had an electric control that helped you position your aching legs and back. You sat in the chair while your spouse filled out the paper work and gave the salesperson her credit card because you were too tired to get up.
When the chair arrived at your home two days later you let your spouse rearrange the furniture in the living room, something you never do because you are the one who has the decorating sensibility but you were too tired and it was too much effort to make any decisions or move anything around. She put the magazine rack to the left of the chair that was stacked with Poets & Writers, The Economist, People, Time and the Santa Fe Reporters you had all good intentions of reading but you ended up using the magazines to place water and pill bottles on because your brain couldn’t keep your eyes or your mind on what you were trying to read.
Even though it’s summer in Santa Fe and it’s 85 degrees outside you sit in that lounge chair covered in the Calvin Klein cashmere throw someone gave you for a wedding present and doze off, wake up, doze off, wake up, wonder if it’s time to take a pill, try to go back to sleep but can’t because the clock on the armoire is going tick tock, tick tock, tick tock but you don’t have the energy to get up out of the lounge chair and do anything about it. So you stay there, half-reclined, trying not to hear tick tock, tick tock, tick tock, but that’s all you hear. You can’t go to sleep, you can’t get up because the chemo drugs give you neuropathy and make you stiff when you move, so you try to bargain with clock while you are sitting there. Please speed up the seconds, make them go faster so this all will be over sooner. But the clock won’t cooperate. Tick tock, tick tock, tick tock, it mocks.
One year to the day after your wedding you are in your closet and you look at your wedding dress that is hanging up and you decide to try it on. For a moment you are happy, remembering how beautiful your wedding was and how happy you were that night and you’re happy right then because your dress is too big because you’ve lost 20 pounds. Then you make the mistake of looking in the mirror and you see how much smaller your right breast looks than your left breast and you see your bald head and remember how on your wedding night you felt beautiful, how good your hair and makeup looked and you sit down on the bed and sob. The more you try to stop the harder you sob. You cannot believe what has happened to you, what has happened to your body, your spirit and your life with your spouse since the wedding. You are living apart because her job is based in Italy and you are getting treated in the US. She is constantly on an airplane, traveling to be with you and take care of you. You do nothing for fun anymore. Everything is centered around your healthcare, your doctor appointments, your medical tests and treatments, your cancer. You resent it.
Cancer makes you love and hate Facebook. You are glad for the love and caring you feel from your friends and your “friends,” for the ability to communicate and feel connected when you are isolated and housebound because you don’t have the energy to go out and even if you did you wouldn’t because your immune system is compromised and you are scared of being around people, scared of getting sick and having to go to the hospital. When you do go out if someone sneezes or coughs you want to shove a mask onto their face or worse, smack them. You are sure their germs will inevitably find their way into your blood stream and kill you. On Facebook you are jealous and envious that everyone is living their lives, hopping on planes, taking trips to writing workshops, taking vacations, posting fabulous pictures of themselves with their fabulous hairdo’s in all the fabulous places they are going to. You want to hate them but you can’t because you understand they aren’t doing that to you, they are doing what you used to do B.C., Before Cancer.
A.C., After Cancer is your new “normal.” You hate it. You have to think about everything you do. Don’t lift anything heavier than three pounds with your right arm because you had an axillary dissection, had 13 lymph nodes removed, nine of which were cancerous. You are at risk for lymphedema the doctors, nurses, and physical therapists tell you. They measure five points on your right arm, compare it to the measurements of your left arm, tell you that you have to wear a compression sleeve when you take a long haul flight, tell you that you should also wear compression stockings because not only are you at risk for lymphedema you are now more at risk for blood clots. So you buy compression stockings and you listen to yourself as you struggle to get them on. You sound like your mother did when she got older and was grappling with her stockings as she put them on. You feel like you’ve become your mother, something you vowed you’d never do, always running to the doctor, making medical appointments a full time job, taking pills every day, picking up prescriptions at the pharmacy.
You were tempted to ignore the doctors and not buy the compression sleeve and stockings but you would be stupid, putting yourself at risk for a blood clot that could now easily start in your leg, travel to your lungs and kill you, when it could have easily been avoided. It would be a cruel joke to die from a blood clot and not the cancer. You wonder, how did this happen to me? How did this become my life? Why can’t I go back to never using my health insurance, not taking pills, not going to doctors all the time, not having to think about blood clots? You want to go back to not worrying about your health. You never worried about your health before. Now it seems like that’s all you do. And your spouse does it even more.
This is also what cancer does: makes you glad it’s 2014 when your marriage is legal not only in New York where you were married, but in New Mexico where your residence is and in California where you are being treated at Cedars-Sinai. You can not describe how incredibly wonderful it feels to be able to write down without hesitation on the myriad of forms you must fill out that your beloved is your Spouse. The doctors are legally obligated to talk to her, to give her information, to answer her questions.
You remember the first appointment you had at Cedars-Sinai, the first time you met one of your doctors. She walked into the examination room where you were sitting on the exam table with nothing on but a hospital gown that was open in the back and you stood up and introduced yourself and shook her hand.
Your spouse was sitting across the room in a chair and the doctor turned and said, “Hi, are you Elizabeth?” She’d read your files and knew you were married and that Elizabeth was your spouse’s formal name.
“I’m Libby,” your spouse told the doctor and shook her hand.
“Don’t worry,” the doctor said and clasped Libby’s hand with both of hers. “We are going to take good care of Nancy and we’ll be right there with both of you the whole way through this, whatever it is.”
Libby had to whisper “thank you” because she was as choked up and grateful as you were.
There was no need to pull out the Medical Power of Attorney forms you’ve been carrying around for years and make demands. They understood. They have no question that your spouse is your spouse, that she has a right to be there, has a right to make decisions for you if needed. They direct their conversation as much to her as to you and you love them for that as much as your love and appreciate their brains, their training, their expertise, and their infinite compassion.
You are grateful that your spouse works for a Swedish company that thinks your marriage is as legitimate as the straight employees’ marriages, that provides you both with fantastic health insurance, that tells your spouse to take all the time she needs to be with you.
This is what radiation does: makes you believe it is a pleasure compared to the chemo. You aren’t nauseous and throwing up, you’re in and out because it only takes five minutes not hours like chemo did, and even though you have to go five days a week and eventually your breast becomes tender, dense, heavy and swollen you can take that. You can take anything after the fucking chemo.
Your radiation oncologist tells you, “You’re a model patient.”
You tell her, “I don’t mind being a model, but I do mind being a patient. Patience has never been my strong suit.”
This is also what radiation does: makes you grateful for your friends who don’t ask but tell you they will come pick you up for radiation appointments and won’t take no for an answer. One says I’ll be there every Monday, another says I’ll be there every Tuesday, and another every Friday. And they are there. They come to you like the Sisters of Mercy. They save you. You did not expect this, it would never have occurred to you to ask, but there they were, working the schedule out between them. They made you laugh, made you less anxious and you valued the time you had with them. You will never forget their kindness.
Mostly, this is what cancer does: makes you wonder how it is possible to love your spouse even more than you did B.C., but you do. Even though you were out of it and not there, suspended in time and space while you were on chemo, you were aware of what she was doing, how she was on the phone all day with the Cancer Center two days after your first chemo when you were puking and puking, when your body was in such pain that you just wanted to die and just be over with it, how she was consulting with the triage nurses and the doctors, how she didn’t take it personally when you screamed at her when she said you should go to the Cancer Center and you refused because it was just too much.
You marveled at how calm she was every step of the way through everything even though you knew she was frantic inside, how easy it would have been for a lesser person to slack off at work or on caring for her spouse but she stepped up to the plate on both counts and never complained or resented what she had to do.
You always knew, from the beginning, over a quarter of a century ago when you first met her in the office and broke out into a sweat when you introduced yourself and shook her hand, then later made your commitment to each other without the benefit of marriage, that even though Libby was almost ten years younger than you she was more mature and capable and you are grateful how, through the whole cancer ordeal, she kept showing you that over and over again. You think about all the people who don’t have anyone in their life who is consistently there, about all the people whose relationships weakened and broke during their illnesses because the fractures were always there but they weren’t paying attention to them, and you are proud of yourselves for the work you did together early on, for the work you did to build the solid ground that you stood on while you were going through this cancer crap.
You are clear, though, that you didn’t need cancer to show you this about your spouse. You didn’t need cancer to teach you lessons you already learned.
Some mornings you wake up and ask yourself have I really spent this whole year dealing with cancer? After all you’ve been through—the waiting, the worry, the uncertainty, finally a proper diagnosis, a lumpectomy and axillary dissection, chemo, radiation, more surgery—it still shocks you that you have cancer. Your world is different now. There’s no going back.
Cancer does this too: makes you spend hours trying to figure out if you’ve learned any lessons from having cancer. Now that cancer is part of your lexicon, you see it everywhere. You’ve read all sorts of articles and essays by people who’ve learned all sorts of important things through their experience with cancer. They see things crystal clear now, they’ve gotten rid of their anxieties because they realize how petty those anxieties are compared to the Big C, they develop empathy and compassion, they value their loved ones more, they start truly living their lives because coming up against their mortality makes them realize the value of living and time. They stop sleepwalking and wake up to themselves, their world and the people around them.
This has not been your experience. You haven’t had all those revelatory moments because you got cancer and were probably a year away from leaving this life if it hadn’t been caught. All the big, important lessons those other people learned through their experience with cancer you learned a long time ago through hard work in therapy and an overwhelming desire to truly be who you wanted to be, do what you wanted to do and go where you wanted to go. You didn’t need cancer to wake yourself up. You woke yourself up a long time ago with the help of wonderful people and your own desire and willingness to dig deep.
Mostly you’ve been annoyed when you haven’t been nauseous and tired or stunned like you were in the beginning when you were first diagnosed. Cancer is annoying. You’ve been annoyed with it, with the treatments, the side effects of the treatment, the disruption to you and your spouse’s life. That’s not to say there haven’t been moments of grace. There have been incredible moments of grace and kindness and love and laughter with your spouse and your friends. Moments you will be forever grateful for. But annoyance is the blanket that has covered and sometimes smothered you in this process and no matter how hard you tried to throw the covers off you couldn’t. Cancer wouldn’t go away.
Ultimately, this is what cancer does: shows you that nobody needs cancer. Nobody needs to get cancer to learn anything. One of the reasons for being alive is to learn lessons throughout life. No one, absolutely no one, if they are truly living their life needs a crisis or health scare like cancer to wake them up. And, certainly not you.
Nancy Conyers truly believes in a wider world. She has lived in Philadelphia, New York, Boston, Ann Arbor, Dallas, NJ, CT, Shanghai, Hong Kong, Santa Fe, and Modena, Italy.
She did her undergraduate work at the University of Pennsylvania, and holds a Master of Fine Arts in Creative Writing from Antioch University in Los Angeles. She is a member of Antioch’s Alumni Advisory Board for Lunch Ticket, Antioch MFA Program’s online literary journal. She was previously the assistant director of the Wharton Executive MBA Program and was the lead instructor for the Writers in the Schools Program (WITS) in Dallas, Texas teaching creative writing workshops to students and teachers in the Dallas Independent School District (DISD). While teaching in Dallas, WITS received a grant from the National Endowment for the Arts for curriculum development and Nancy Conyers helped design and teach in a longitudinal study to track the writing progress of the students in the Lakewood neighborhood schools. She also trained other WITS instructors.
Nancy Conyers has been working with students and their parents for over fifteen years as an educational consultant and is a cofounder of the East West Educational Consulting Company. Using her experience in admissions at the Wharton School and experience teaching writing, Nancy helps students gain entrance into the top boarding schools, universities and graduate schools in the US. Her approach is to work with each applicant to bring out their own true essence in the answers to their essay questions, thereby enabling them to stand out in the admissions process.
While living in Shanghai, Nancy created the Let Your Dogs Out! Writing Club for Kids at the Shanghai Community Center and So, You Want to Write, the Shanghai Community Center’s creative writing class for adults.
Nancy has been a long-time participant in the Shanghai International Literary Festival interviewing Pulitzer Prize winners Junot Diaz and Edward P. Jones in addition to many other authors. She has also led writing workshops for the Shanghai Lit Fest including collaborating with Deborah Slater, founder of the Deborah Slater Dance Theater of San Francisco, on creating characters through movement and writing exercises. In 2008, she was chosen as a featured reader for Out Loud! a literary reading series for emerging writers in Shanghai, and in 2010 she was one of the emerging writers chosen to participate in the Literary Death Match at the Shanghai International Literary Festival.
Nancy also truly believes in the old adage that the more no’s you receive the closer you get to the yes’s. She has a pile of rejections for her short stories and essays but has published a cookbook in the US, an article in Lunch Ticket, and is finishing final revisions of her forthcoming novel A Walk in the Mist.
Featured image courtesy of Danielle Conyers.