Last week I spoke with NPR host Neal Conan on ‘Talk of the Nation.’ Listen to the interview here.
Seamus took this photo of me during a brief outing to the west village this weekend.
The latest piece in “Life, Interrupted,” my weekly column for the New York Times ‘Well’ section.
“Today, I’m writing from a hospital bed in New York City. I’m in the bone marrow transplant unit, where this week I’ve undergone 20 intensive chemotherapy treatments in anticipation of receiving my brother’s stem cells. In the year since my diagnosis with leukemia, I’ve struggled to hold onto a sense of who I am while I watch the person in the mirror change.
Looking back, I call the first month after my diagnosis “the cancer bubble” because I wasn’t showing obvious signs of my disease. I looked about the same — maybe a little more tired and pale than usual, but a stranger could never have guessed that I carried a secret, deep in my bones.
In the oncology ward, I still felt invisible, flying under the radar with my waist-length hair and the nose ring I got when I was 14. In the waiting room at my second appointment, a man with a sleeveless shirt and a bandanna covering his hairless head leaned in toward my father, who’s been bald since the ’80s, and raised his fist in the air: “Live strong, brother,” he said. Later, my dad and I had a good laugh about the mix-up — it helped ease our tight nerves for a moment. But I remember also feeling slighted, as though my terrible new disease wasn’t being acknowledged.”
Continue reading, here
My latest column for the The New York Times:
Photo Credit: Seamus McKiernan
“Cancer goes hand in hand with waiting — waiting for doctors, test results, appointments, and most importantly, waiting for better days.
Since my leukemia was diagnosed last May, I’ve been waiting for a bone marrow transplant, a risky procedure — and my only hope for a cure. Today my friends are busy starting their lives, but at 23, I am worried that mine might end before it has really begun.
My disease was high-risk and advanced when it was discovered. I was bedridden, suffering from painful mouth sores that made talking and eating very difficult, and I had frequent infections because my immune system was compromised.
Since the diagnosis, my life has been a slow emergency, my world a waiting room. Each month I do a round of chemotherapy, and then the doctors examine my bone marrow to determine if I’m ready for transplant. “Not yet,” they keep telling me, “just a few more rounds.” And so I wait.”
Continue reading, here
“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.”
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?
One unexpected aspect of falling ill is, to sum it up in a word: awkwardness.
People often feel awkward when broaching the subject of illness and cancer in particular. What can I do? What do I say? How should I say it? Should I say anything?
From my end, I can tell you that it’s awkward for the patient too. How do I deal with friends who are clearly at a loss for what to say? How do I respond to the question, ‘is there anything I can do’? When people ask me ‘how are you,’ do they really want to know how I am, or do they just want to hear that I’m ‘doing ok’? How do I talk about radical changes in appearance (if at all), such as baldness?
The list goes on.
I’ve struggled with this awkwardness–these questions–since the very beginning of my diagnosis. With much reflection and input from friends and family, I’ve come up with a few tips and suggestions. I’ll be posting advice regularly under the category ‘Secrets of Cancerhood.’ If you feel inclined, we can extend the conversation to the comment section. I think these themes run through many areas of life.
Secrets of Cancerhood #1: Say the Unsaid
What’s in a name? When you’re talking about the name of a medical diagnosis, it can mean everything.
Don’t be afraid to call your condition by its name. It will be daunting at first, but you will find that it gets easier each time you say it. Conquering the vocabulary of your disease is not just a semantic exercise. It’s a vital first step towards shedding your denial and looking your new reality in the eyes.
At first, I was incapable of pronouncing the term leukemia without choking on my words. I didn’t want to recognize it. It was too big and scary. And as long as I avoided it, I noticed that everyone else followed suit. The disease became the proverbial elephant in the room, growing more and more menacing with each conversation.
Talking openly about what you’re going through is contagious (in the healthiest sense). Illness has a mirroring effect that can be counterintuitive: it’s often the caregivers who take direction from the patient. You set the tone. As you open up about your condition, you indicate to your friends and family that it’s OK to talk about what is happening to you—both the good and the bad.
In my experience, some of my visitors seemed so intent upon not upsetting me that they avoided the topic of cancer altogether. I can’t blame them, but by eschewing the reason I was there in the first place, they left me feeling more uncomfortable and less reassured than before. I made it clear to them that there is no perfect thing to say, but that you have to say something. No one can “feel your pain,” but if you don’t talk about it, you are setting yourself up to feel isolated and misunderstood.
Openness has the effect of moving the disease from the subtext to the foreground, stripping it of its power to silently infect and distort the conversation. Once it’s out there, you might be surprised to find that the conversation will move fluidly from heavier topics to lighter ones.
One rainy spring morning in Paris, I woke up with flu-like symptoms and decided to take a “me” day from work. Little did I know, I would never return. Three months later, exactly one year after graduating from college, I found myself in the oncology ward of a New York City hospital, undergoing my first of many courses of chemotherapy.
Back in France, my doctor had attributed my symptoms to burnout syndrome, an umbrella diagnosis that might well apply to any sleep-deprived college grad in her first year out in the “real world.” He sent me home to the US with orders to rest. But when I continued to feel unwell, I did what all doctors tell you not to do: I typed my symptoms into Google. There were hundreds of matching hits but the word cancer jumped off the screen. I can remember the momentary chill I felt in seeing that word, but I promptly dismissed it: life-threatening illnesses, after all, only happen to other people.
My Internet search proved ominous at my next doctor’s visit: “Acute Myeloid Leukemia,” my doctor said, his voice quavering as I began to cry. Most people, while peripherally aware of their mortality, are unprepared to receive such news. In the time it took the doctor to utter those three words, my life suddenly felt like a house of cards, ready to collapse on my dreams for the future. I was 22 years old. My friends were busy starting their lives, and I was worried that mine might end before it had really begun.
Everyone told me how difficult chemotherapy would be. The doctors and nurses prepared me for what to expect, gave me pamphlets explaining the disease and its treatment, and guided me to websites and support groups. I learned to accept that when it comes to the medical treatment, my role is limited: I must trust the wisdom and instruction of my doctors and hope for the best.
Today, as I prepare for a bone marrow transplant, I’ve learned my biggest challenge is not just physical. It is enduring the boredom, despair, and isolation of being sick and confined to a bed for an indeterminate length of time. There have been remarkable advances in cancer treatment over the past few decades, but there is no magic pill to cure the emotional distress of illness. I have discovered it is up to me to help myself.
Through much trial and error, I am creating a roadmap for emotional health and spiritual wellbeing. The way I spend these long hours in bed holds remarkable power over the way I feel, both physically and psychologically. In the hope of helping the many others who share the struggle of a long and uncertain convalescence, I’ve decided to share my experience–the good and the bad, the deflating and the inspiring.
A version of this post was published on the front page of the Huffington Post on 1/10/12.