Losing all of your hair, especially for women, can be a very upsetting experience. I chose to shave my head before chemotherapy because I couldn’t deal with the idea of long wisps of wavy brown hair coming out by the handful. Once I had sufficiently mourned my mane and gotten used to people staring at me in the street, I realized that I didn’t mind it. Bald can become beautiful too!
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.
Today, I’m feeling too tired to write anything interesting. Instead, I’ve been going through pictures of my “cancer journey” and I thought I would share one of them with you.
Ideas for a caption? So far, what comes to mind is ‘Cross Dressing is The Best Medicine.’ Post your caption below!
Photo Credit: Anne Francey
Me & my wonderful brother — who not only looks great with a blue bob, but will also be my bone marrow donor in my upcoming transplant!
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.
Music, after writing, is my greatest passion. But when I entered the hospital in June 2011 for induction chemotherapy, I stopped listening to music altogether.
Music, the saying goes, can soothe even the savage beast. What about the frail beast? The sad one?
Between the hospital walls, hearing my favorite songs filled me with a deep, unbearable ache. Music, and the memories attached to them, reminded me of all that was no longer. It reminded me of myself at 16, lugging my 30-lb. double bass up the steps of the Lincoln Center subway station in five-inch heels en route to my lessons at Juilliard. Where had that feisty, fresh-faced music student with long auburn hair gone?
I didn’t know it back in June, but I was in the process of mourning my ‘old’ self: on some level, I was realizing that everything had changed–that my life, as I knew it, was over.
How many ‘selves’ do we put to rest over the course of a lifetime? It was strange for such recent memories to feel like they belonged in an old filing cabinet.
Almost four weeks into my hospitalization, I reached the height of my despair, frustration, and anger. I couldn’t help but see the world in the binary: everyone out there is moving forward, and I’m in here, in an oncology ward, stuck in place.
I was in an especially somber mood. The week before, I had lost all of my hair. (It doesn’t all “fall out” at once–some of it does, and the rest you have to yank out with your hands. It felt like my scalp was a garden and I was pulling weeds from damp soil.) I was also suffering from mucositis, a painful side effect of chemotherapy that causes inflammation and ulceration of the throat, mouth, and digestive tract. I could barely eat or talk.
Then, on June 25, 2011, something magical happened. My friend Jon Batiste, an internationally acclaimed jazz musician whom I’d first met at a music camp as a teenager, came to visit me in the hospital. To my surprise, he showed up with his entire band (aptly named ‘The Stay Human Band’), made up of tuba player Ibanda Ruhumbika, alto saxophonist Eddie Barbash, and drummer Joe Saylor.
It was a new concert venue for the band, not to mention for Mount Sinai Hospital (no lighters allowed). But in some ways it was more suited to a concert than anywhere else. Hospitals ache for music. Oncology wards, more than anywhere else I know, are music-less places. Instead of melody, there is constant beeping. Instead of singing, there is the steady medical call-and-response loop: nurses hollering to each other; patients calling, sometimes screaming, for their doctors; nurses scrambling to find the doctors; visitors searching frantically for nurses. Then, there are times when you hear nothing at all. In some ways, the diverse noises of a hospital–however annoying–remind us that the hospital “machine” is in healthy operation. It’s the silent moments, the hollow sounds of quiet suffering, that can be most startling. These are the noises of healthcare.
Jon, Ibanda, Eddie and Joe were purveyors of the music of health. As the sound of Jon’s harmonabord filled the hallways, nurses and patients filtered out of their rooms. The patients who could walk, walked. Those who couldn’t were wheeled to their doorways. Others listened from their beds. Every inch of the 25-room floor was filled with music (I even worried we might receive a noise complaint).
Timidly at first, and then with jubilation, patients, nurses, and medical staff began to dance and clap their hands. The oncology ward was breathing a sigh of relief, its inhabitants rejoicing in a temporary timeout, losing themselves to the beauty and healing power of the music.
The saints had marched in (they played that song, too).
Check out this amazing short video of the Stay Human Band playing at Mount Sinai Hospital on June 25, 2011:
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?
First of all, I want to thank everyone–my friends, family, and supporters–for keeping me in their thoughts and prayers today. I am so touched and inspired by the overwhelmingly positive response I’ve received about my blog.
Here’s the scoop on today’s biopsy results: my disease is not getting more aggressive. My doctors would like to do one to two more rounds of treatment. I start treatment again this Saturday. This means I will be getting my bone marrow transplant in March or April.
In the past few days, many of you have offered to get tested to be a donor. Saying ‘thank you’ feels like an understatement. In fact, I am tremendously lucky that my 21-year-old brother, Adam, is a perfect 10-out-of-10 match on the donor scale.
As a friend wrote to me the other day: “Modern science is miraculous, and so very often are kid brothers.”
I would, however, encourage everyone who hasn’t already signed up for the bone marrow registry to do so. The process is so simple: all they do is swab the inside of your mouth with a q-tip and you’re out the door. Not to mention, it’s not everyday that you get to position yourself to save a life.
You can even get creative with it. My boyfriend’s coworker organized a bone marrow drive in their office. It was easy to put together, and they signed up lots of new donors.
A special note, the national bone marrow registry has a shortage of donors from minority ethnic groups. As a Swiss-Tunisian, doctors said I was lucky my brother was a match. The chances of finding a close genetic match may have otherwise been slim.
Sign up for the registry here.
*If you live in upstate NY, you have the potential to save a life this week! Emily Ziegler, a junior in high school from Queensbury, was recently diagnosed with leukemia. Help her on Jan. 12 by coming to the bone marrow drive for her.