Life, Interrupted

This picture was taken last July. After one long, grueling month in the hospital, I couldn’t have been happier to return to Saratoga Springs, home of the annual horse racing banaza that draws gamblers, tourists and big-hat-wearers for 5 weeks every year. The restaurants raise their prices and the main drag, Broadway, is teeming with revelers. Downtown is crowded with a rowdy contingent of Harley motorcycle-types, who park their metal horses in long dominos along the main street, and the gambling crowd, many of whom eschew the track for divy bars where they can watch the races on tv. It’s a noticeable contrast from the other 11 months of the year, when this sleepy rural area is more Birkenstock than Big Hat.

Photo Credit: Kevin McKiernan

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.

I’m driving to my destination — I have to get there on time — but something is wrong under the hood. The engine’s clacking. At any moment, I’m worried it’ll sputter out, run out of gas, blow a gasket. I’m driving along, wearily, like a trucker on ice.

This is the metaphor that came to mind last week when I was racing to finish an important project as my body started to falter.

Here’s what happened.

February 1st began on a high note: My dream of writing for a major newspaper publication came true (more details to follow soon)! The editor gave me a deadline of Monday morning. For the first time since my diagnosis last May, I had a project. A responsibility. For the first time in more than 8 months, maybe cancer wouldn’t be my sole job.

Just one day later, I woke up with a feeling I know only too well: deep-in-the-bone exhaustion and achy limbs accompanied by mouth sores so painful that talking or taking a sip of water makes me want to cry. The worry starts to set in. But usually no ones says anything yet.

By 10 p.m. that night I was having uncontrollable chills. My mother piled blankets onto me but nothing could stop my teeth from chattering. I was cold from the inside, not outside. She checked my temperature: 99 degrees Fahrenheit. Twenty minutes later it was up to 100 degrees. When it climbed up to 102.5 I knew the dreaded H-bomb was about to drop. “Hospital, now,” my mom said.

Getting read for an emergency hospitalization is similar to going on a very chaotic, last-minute family vacation. My parents scramble to make sure they have a place to stay, we throw our clothing and toiletries into our carry-on luggage and then pile into the minivan for a four hour drive to New York City. By the time we arrived, it was almost 3 a.m. The ground floor of the hospital was completely deserted with the exception of a few patrolling security guards. And I was furious.

I hated my body for failing me now. Hadn’t it put me through enough? The timing seemed beyond unfair. I had two days to write my piece and, up in my hospital room, I could barely keep my eyes open from all the pain medication I was on. I went to bed feeling angry — angry at the white walls of my room, angry at the hospital food, and angry at the nurse who couldn’t find a good vein in my arm for the IV and kept poking me with needles.

My boyfriend woke me up the next morning and said: “You are going to get this piece done, no matter what we have to do.” I didn’t believe him. But he wasn’t kidding around and within half an hour we had begun the slow, tedious process of brainstorming and drafting an outline. I wasn’t the most pleasant collaborator — more times than I can count, I got tired, frustrated, broke into tears, and then had to take a long nap to recover from my outburst. But somehow, we did it. Needless to say I couldn’t have done it without him, but I got the piece done.

Comparing our bodies to vessels — like cars — that carry us through our lives, seems apt up to a point but it only goes so far. In the car metaphor, you can leave your broken vehicle by the road, hitchhike, or buy a new one. But in reality, we only have one “car.” While some people believe the mind can overcome the body, for the majority of us, especially for those of us who are ill, when the body is in crisis, the mind is too. Physical illness infects the mind: when your body ails, your mind, your thoughts, your plans, your identity is changed.

So, what can you do when your mind wants to do one thing and your body is saying another?

These three golden rules are what got me through the weekend: respect your body’s limitations (when you feel too tired to keep going, take a nap), compromise (one hour of work, one hour of rest), and when you need to, ask for help (thank you, Séamus).

*Footnote:  I have no idea what as gasket actually is, though I know of it. I can’t drive — I don’t even have a permit– but I still have my poetic license!

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!

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.

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.

My brother and me, moments after finding out he was a 10-out-of-10 match.

“The anxiety of waiting is not continuously violent; it has its matte moments; I am waiting, and everything around my waiting is stricken with unreality.” -Roland Barthes

Today, sometime after 12:30 pm, my doctors will decide whether I will get a bone marrow transplant this month.

Those who are ill know that sickness goes hand in hand with waiting — waiting for doctors, appointments, test results, and most importantly, waiting for health and better days. As I sit in the Ruttenberg Center of Mount Sinai Hospital this morning, each passing minute lives in its own world.

Every second of every day of the past eight months has been spent waiting for news about my transplant — my only lifeline to the world of health and recovery. These last moments of suspense seem especially unfair. I am left to wonder: does patience have limits?

Disease infects both your body and your relationship with time. It not only robs you of your health, but it also usurps your dominion over time.

Eastern thinkers and spiritualists encourage us to live in the present. (I’m simplifying here, but you get my drift.)  But all I have now is the present. Life-threatening illness brings a terrible clarity to the “now,” while simultaneously obscuring everything else.

I no longer see the boats on the horizon. They’re shrouded in fog.

From the moment I was diagnosed, I became a second-class citizen in the land of time. Illness corrupts one of life’s most blessed and delicious activities: daydreaming about the future, without fear.