“I was so excited for what lay ahead, I nearly forgot to wave goodbye to my parents. Armed with a college diploma, my first job offer, a one-way ticket to Paris and a new pair of heels, I was ready to take on anything. Little did I know, I would be back in New York seven short months later. But my parents would not be taking pictures at the airport or chatting about my future plans. I would be in a wheelchair, too weak to walk.”
By SULEIKA JAOUAD & SEAMUS MCKIERNAN
If it takes a village to raise a child, you might say it also takes one to care for the sick. Cancer is at once personal and communal. Disease lives in the sufferer’s body but the experience of illness is shared, often intimately, by our loved ones. And yet, caring for the sick can feel like writing a travelogue about a country you’ve never visited. You can’t know where you haven’t been.
“What can I do to help?”
This is the sincere, often reflexive, response people have when they find out I have cancer. When I was diagnosed with leukemia last May at the age of 22, my boyfriend, Seamus, sprung into action as my CCO: chief care-giving officer, after my parents. As the news of my diagnosis spread, my friends, acquaintances — and even some strangers — formed a loving support network. It was a comforting reminder of how selfless people can be.
But while most of my friends and family would help me in a heartbeat, knowing how to help can be a daunting, even paralyzing, challenge. Over the past eight months, through seven hospitalizations and six rounds of chemotherapy, Seamus and I have sustained a running dialogue about what it means to be a caregiver and a care recipient; what it means to be in love with one another while my body’s at war with itself.
This guide to helping a friend with cancer is built from parts of our many conversations on the subject of care giving.
Seamus McKiernan is an associate blog editor at The Huffington Post.
OK, Cancer is a gloomy subject — there’s no pretending it’s not. But often, our instinct is to over-emphasize the proverbial “silver lining.” Positive thinking at its best is an expression of hope in hard times. And while positivity itself is not a bad thing — it’s certainly more enjoyable than fixating on the negative — it can be problematic if it distorts the reality of what someone’s going through.
Americans like to think of themselves as “positive” people. Our culture is steeped in positive thinking — from self-help books to Harvard courses to the ubiquitous mention of the American Dream. After all, there is no dislike button on Facebook. But for a cancer patient, being bombarded with wild optimism for its own sake can sometimes achieve the opposite of its intended effect.
When I was first diagnosed, my close friends and family tried to put on a brave face, but instead of making me feel better, it sometimes made me feel more alone: was I the only person who felt scared, confused, and angry? I had cancer — why did everyone insist upon avoiding the topic?
Barbara Ehrenreich explores the negative effects of positive thinking in her recent book Bright-Sided. “We need to brace ourselves for a struggle against terrifying obstacles,” she writes, “both of our own making and imposed by the natural world. And the first step is to recover from the mass delusion that is positive thinking.” Ehrenreich isn’t against lightness or laughter, but instead, she urges us to consider how positivity and denial can go hand in hand.
While our instinct can be to immediately steer conversations with cancer patients towards the cheerful, it’s critical for someone who is sick to feel comfortable venting feelings of fear, sadness, anger, loss, and isolation. Being honest about how a life-threatening illness can make you feel — both as a caregiver and the one being cared for — helps get rid of the elephant in the room by acknowledging its presence. One of the most important things you can do for a friend with cancer is to be an equal opportunity listener. Make it clear that you are willing to listen to both the good and the bad.
As I mentally prepare for my bone marrow transplant I can’t help but revisit my first hospitalization following my diagnosis in May 2011. Eight months to this day, I entered a New York City hospital for five weeks of induction chemotherapy.
Within 48 hours, I was placed in isolation in a drab room where the windows didn’t open; an electronic bracelet was strapped to my wrist (my tag said my name but I half-expected to be labeled Patient 4256345); I was issued a uniform (are budget cutbacks the reason for backless hospital gowns?); my head was shaved by someone they insisted upon calling a beautician who gave “haircuts” for $25 bucks a pop (I had entered a new etiquette zone: how much do you tip for a cancer haircut?); and a triple lumen catheter was surgically implanted in my chest to create a central line through which chemotherapy and fluids would be administered. I was all tied up, with both limbs connected to a monitor holding IV bags that loomed over my bed like an awning.
This was to be the first of my many incancerations.
Over the next few weeks, I had a lot of time on my hands to reflect on the hospital experience. Before long, as my immune system became depleted, everyone who entered my room was required to wear a mask. (And I had to wear a mask anytime I left the room.) To say nothing of the loss of privacy a hospital patient endures (people burst in at all hours without notice), the face mask requirement added to the feeling of separation that distinguishes the helpers from the helped. Visually, it was a bold signpost for disease, delineating me from the rest, the sick from the healthy. What a strange sight it was to wake up day in and day out to find a cluster of doctors–only their eyes visible above their purple face masks–hovering over me. Eyes and ties. Sometimes, the rules were expanded to require visitors to wear gloves and a hospital gown. I wondered if the next stage would be hazmat suits, like in the last part of E.T. Suleika, phone home.
It dawned on me that along with the other patients on the floor, I was the “Other.” And it wasn’t the fault of the medical staff. Cancer has a way of issuing patients an instant ticket to the world of otherness. You look different, you feel different, you even sound different, as you drag the beeping monitor with you everywhere you go (I jokingly called it my “little friend”).
I couldn’t help but feel a bit like an “inmate” shackled to the schedule of the “outside world.” I remember guiltily feeling envy, and eventually some resentment, towards my visitors as they were leaving the hospital. “I’m taking a break, and I’ll be back soon,” a friend would say. I could understand this, but it also made me angry. I too desperately needed a “break.”
The escape fantasies began when I lost enough weight that I could slip my electronic bracelet off my wrist. Central Park taunted me from my window. I plotted my escape and dreamt about stepping outside the confines of the hospital and standing in the rain — even if just for a minute. Fresh air is an amusement ride in the imagination of someone who has been in the hospital for an extended stay. One day, as I was being wheeled out of the oncology ward for an emergency CT scan, I asked the man pushing my bed what would happen “if” I tried to escape from the hospital. He laughed but then gave me a serious look and said: “You’ll be in big trouble if you do: your bracelet will set off an alarm and the guards will drag you back up here.”
Finally, on a day when I was feeling relatively stable, I attempted to go through with my plan. I hid my electronic bracelet under my pillow and told the nurse I was going for a short walk. I made it as far as the cafeteria on the ground floor. Then, I froze. It was lunch time and people swarmed around me, brushing and bumping me as I tried to stand my ground. My anxiety mounted as I thought of all the germs in the air. I was having trouble breathing. What if I fell? What if I fainted? “I don’t belong here,” I realized. Within a few minutes I had returned to my room. Beep, beep. My little friend chirped. Strangely, I felt safe again.
As a cancer patient, the lexicon of punishment seems to scream out from everywhere I look. Your movement is monitored. Decisions as basic as what and when to eat require pre-approval from a higher order. Not to mention that chemotherapy feels like a semi-lethal punishment in and of itself. The medical staff plays the judge. At any moment, your doctor can issue a sentence: probation, house arrest, time in “jail,” and for some, even death row. I’ve never had to appear in court, but I imagine the adrenaline pumps the way it does before a doctor reads your biopsy results.
Of course, I was incredibly lucky to even have the option of hospitalization, a “right” denied to countless people in this country and around the world. But I couldn’t help but to reflect on the parallels between hospitals and those other (increasingly privatized) confinement palaces.
In retrospect, inventing the term “incanceration” to describe my new diagnosis reflected just how confused, scared and isolated I felt. It’s not that the hospital and my doctors were bad. Far from it. I knew they were the very best and I felt a deep sense of respect and appreciation for them. But on an irrational level, I also felt wronged by those whom I felt had “poisoned” me (medical staff who administered the chemotherapy) and by those who encouraged me (family and friends) to think positively. Finding the silver lining seemed like an impossible feat.
At the peak of my self-pity, I remember asking my favorite nurse, “Why would you ever want to work in an oncology ward?”
Her response really changed my perspective. She told me how she used to work in the spinal cord injury unit, but after a few months, she couldn’t handle the emotional toll it took on her. She transferred to oncology. “You mean there’s a place worse than here?” I asked. She described the patients who come in (often around my age) and wake up in a hospital bed only to discover that they are permanently paralyzed from the neck down.
I felt ashamed that I had forgotten one of life’s truest maxims: there’s always worse. Or to say it in a different way, people who are faced with disease, misfortune or loss in the world constitute an expansive, age-old club.
I remembered how lucky I was that a cure was even an option for me. That day, as I dragged myself out of bed to go for a walk, I forgot how tired I felt and luxuriated in the movement of my legs and the in-and-out of my breathing.
It took a long time for me to begin finding new, more positive ways of understanding what had happened to me. But learning to accept that I was very sick also helped me to realize that I needed help in order to survive this disease. Could I begin to see the hospital not as a prison, but instead as a place of healing that was at times punishing? Could I learn to view my doctors not as judges but as gate keepers to a long and complex healing process? This much I knew: I am lucky to have my family, friends and a dedicated medical team in my corner.
Still, every time I think I have come to peace with my reality, a new bump in my medical journey can quickly undo any fledgling resolve. But instead of listing all the ways in which having cancer has obstructed my freedom, I am challenging myself to think of cancer as my guru and to remind myself of all it has taught me. It’s hard, but I’m trying.
There is a dreadful routine to chemotherapy. It is a predictable poison. After my first few rounds of treatment, the newness faded away to reveal an awful realness. Contrary to what I hoped, chemotherapy was not an extracurricular activity. It was a full-time job.
My life has become synced to a chemotherapy calendar. Each month means a new treatment (a 28-day cycle, which I can do from home, with doctor’s visits throughout). Instead of September, my calendar read: Round Two. (I’m currently in the middle of my sixth round).
I have become an expert at predicting when side effects and symptoms will set in. It’s a ghoulish monthly party — and the guests arrive on time: nausea, vomiting, chills, exhaustion, fever, mouth sores, pain, infections, and emergency hospitalizations.
The Clockwork of Chemotherapy
Despite the “clockwork” of this cycle (start chemo — wait for symptoms — get sick — go to the hospital), at the start of every new round I convince myself that the outcome will be different. This time, I am going to be stronger than my treatment. This time, my mind will outwit my body. This time.
But over the course of the past eight months, not once have I “won” this secret battle with myself.
The same goes for my current round of chemotherapy. The first day of this treatment started off badly. I went to the movies with some friends. I realized the instant we pulled up to the theater that I had forgotten my anti-nausea medicine. But it was a Friday night and I hadn’t been out with friends for weeks so I decided to go anyway. Before the movie had even begun, I had already raced twice to the bathroom to vomit. I threw-up five more times, barely making it to the trash can — not to mention the end credits. My friends offered, and even insisted, to take me home, but I refused. Reeling from nausea and exhaustion, I sat through all 124 minutes of We Bought a Zoo as if my life depended on Matt Damon and his sappy-but-kind-of-charming narrative about a farm of animals.
Why? I needed to feel like I could “tough it out.” I wanted to “beat” the symptoms; to take them to war.
Toughing It Out: The Battle Language of Cancer
Where does this mentality come from?
The cancer world is awash in battle language. Like mantras, our culture repeats these war-like phrases over and over. A few weeks after my diagnosis I even saw a poster that said: Fuck Cancer. Pithy! Cancer books love to traffic in this take-no-prisoners language. They talk about cancer “warriors” engaged in a battle for health and they encourage patients to visualize chemotherapy as a sea of soldiers entering the blood stream to fight off the enemy disease. In a lot of ways, it’s an attractive line of thinking. It’s the hero’s journey mixed with the glorification of war. It’s the us-versus-them theme — except in this case it’s us-versus-us. Cancer is one’s own civil war.
My reaction to challenges has always been to fight hard for what I want. I have always prided myself as a “doer.” In this way I’m probably like a lot of my peers: I like to compete. I like to push myself. I like to win. When I started treatment, it seemed like a no-brainer: I was going to take on cancer like I’d taken on everything else before this.
But as much as I “battle,” I haven’t outwitted chemotherapy and its punitive, punctual side effects. As I write this, I am deep-in-the-bone tired, nauseated, and I haven’t left my bed in two full days. It is difficult not to equate sickness or weakness with a feeling of failure. A year and a half ago I was deciding between two job offers, while this morning I gave up on making a sandwich when I couldn’t open the jam.
Shedding the ‘Win-Lose’ Mentality
Today, as I finish the last day of this most recent round of treatment, I can officially say that I’ve “lost” once again — but I haven’t lost in the spiritual or medical sense. Instead, I’ve lost in the Manichean world of “win-lose” thinking. And I’m glad I did. I am realizing that “beating” cancer isn’t about winning or losing. I wish it were, but it just isn’t.
I’ve decided to take my new “fight” to the win-lose mentality itself. The battle I’ve been waging in the past months has been centered on fear and anger about not being able to do what I once could. In short: feeling entirely unproductive. And for someone who defines herself by doing, this can seem like a pretty bad fate.
Today, instead of pursuing the impossible defeat of mostly unavoidable side effects and symptoms, I’ve decided that my challenge will be to develop a new brand of acceptance: a strong acceptance, a muscular acceptance, but still: acceptance.
Acceptance is not supposed to be part of the lexicon of successful people. Or so we are often told. But I’ve learned that you can’t fight your way out of every problem. The solution to some challenges is not to charge full speed ahead. If this approach feels counter-intuitive, (which it often does), I try to remind myself that chemotherapy, too, is illogical on its face: you are poisoned in order to be cured.
I realize now that the experience of having cancer is more of a tricky balancing act between being proactive about your medical condition, while simultaneously accepting and surrendering yourself to the fact that — for the time being — you can’t change your reality as quickly as you’d like to. Acceptance is not giving up — far from it. But like a prisoner in handcuffs, the best way out may be patience. Trying to wriggle your way out only wastes precious energy. And it can make you go mad.
Stories of cancer warriors like Lance Armstrong make me feel both inspired and inadequate. Clad in the iconic yellow jersey, Armstong triumphed over his cancer as he raced to victory not once, but seven times, in the Tour de France. But it’s important to remember: everyone’s battle is different. Plus, not everyone looks good in yellow.
I want to thank my boyfriend, Séamus, for helping me brainstorm and type this blog post when I wasn’t well enough to do it by myself. I couldn’t do any of this — or fight any of these battles — if it weren’t for him.
Guilt, like cancer, is a greedy guest feasting upon its host. It is non-discriminatory. We have all felt it; wondered what it was doing there; willed it to go away.
First things first: I should acknowledge that I’m aware that feeling guilty about having cancer is more than a little irrational. But when it comes to cancer, guilt is a mercurial, equal-opportunity ‘employer’: both the patient and her caretakers are called to its duty.
The topic of ‘guilt’ came up the other night at my support group meeting for young adults with cancer. I was comforted to hear that everyone in the room felt some form of guilt related to their cancer. I certainly had. From the day I was diagnosed, guilt has been a steady and quiet companion on my journey.
In the outpouring of love I’ve gotten since I began this blog a week ago, guilt has never been too far away. Intermixed in the spectacular and candid messages of support, I’ve also received dozens of apologies from friends, classmates, and acquaintances who feel guilty for not being in touch or not realizing what I have been going through. Or more generally, just guilty for being healthy when I am sick. (We could call this caregiver’s guilt.)
I want to remind them–remind you–that these feelings of guilt, both on your part and mine, are universal and natural. It’s OK not to know what to say. And, I’ve learned: it’s also OK to feel guilty! We run into trouble with guilt when we try to ignore its presence.
The topic of guilt is bigger than illness alone. I suspect we could all benefit from a better understanding of it. Where does guilt come from? Why is it so hard to dismiss? In what forms does it manifest itself? And how can we get rid of it?
To reflect on guilt, then, can be an important act of self-realization. If there’s wisdom in the Shakespearean maxim–‘To thine own self be true’–then the difficult act of reflecting on guilt can yield hard-won self-truths. Guilt, after all, is not something ‘out there’ that we adopt and bring home. It’s in ourselves.
In many cases, guilt is a self-inflicted wound. Although I know I shouldn’t, I feel guilty about being a burden on others, taking up too much “space” with my problems, and causing pain to those I love. How could I not? I trust that others with cancer know what I mean.
Here’s a glimpse into a recent journal entry of mine:
“I feel guilty when I start feeling sick or get a fever. I want to apologize, for I know I will soon make the life of my loved ones hell. My mother will have to drive four hours in the middle of the night to take me to the hospital in New York City. Family will have to take sick-days from work. After long days at the office, my boyfriend will spend night after night sleeping between two hospital chairs. My father will ‘hold down the fort’ at home (this translates to lonely nights spent worrying by himself and feeling very far away from my hospital room). My brother, typical of most twenty-something ‘bros,’ doesn’t talk much about his feelings, but I know the weight of the responsibility as my donor lies heavy on his heart. He has trouble sleeping. Often, when I wake up from nightmares, I hear him tossing and turning in his room next door.”
At times, I have blamed myself for lifestyle choices that might have led to my cancer. During my many travels to developing countries, might I have been exposed to some kind of environmental toxin? If it weren’t for all those late nights during college spent studying and going to parties, would I still have fallen sick? Did my vegetarian phase at age eight strip me of important nutrients and compromise my immune system? Too much junk food? Were my jeans too tight?
Trying to pinpoint the source of something as cryptic as cancer is a study in the absurd.
The belief that cancer happens for a reason can be an attractive line of thinking–where there’s an effect there must be a cause, our logical mind may tell us–but it’s usually untrue. Even if you are diagnosed with lung cancer after decades of smoking, cancer is rarely the patient’s fault (and if there is a correlation, it’s still deeply unfair).
Other common themes of guilt include: feeling ashamed for envying those who are in good health; feeling guilty about the disproportionate amount of attention you receive when you’re sick; and ‘survivor’s guilt,’ the guilt of surviving cancer when so many others have not.
The cure for guilt–to the extent that there is one–must be sunlight. Bring your fears and thoughts to the fore, out into the open. Guilt is made less powerful when you confront it.
Fellow cancer warriors and their loved-ones, any additional advice on how to deal with guilt?