Photo Credit: Shayla Harris/The New York Times
There is a dreadful routine to chemotherapy. My life has been synched to a chemotherapy calendar ever since my leukemia diagnosis last year. I have become an expert at predicting when side effects and symptoms will set in. It’s a ghoulish monthly party, and the guests always arrive on time: nausea, vomiting, chills, exhaustion, fever, mouth sores, pain, infections and emergency hospitalizations.
Despite the clockwork of these cycles (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 past year, after 28 rounds of treatment, not once have I “won” this secret battle with myself.
The cancer world is awash in battle language. Our culture repeats these warlike phrases over and over, like mantras. Cancer books love to traffic in this take-no-prisoners language. They talk about cancer “warriors,” fighting and winning a battle for health. They even encourage patients to visualize chemotherapy as a sea of soldiers entering the bloodstream 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.
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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.
Accepting my diagnosis was difficult enough, but understanding the medical jargon that accompanied it felt as though I was learning a foreign language. A really hard one.
Although my initial bone marrow biopsy results in May 2011 revealed that I had Acute Myeloid Leukemia (AML), following further discussion and deliberation, my doctors determined that I actually have Myelodysplastic Syndrome (MDS), a disorder of the blood and bone marrow.
At first, this didn’t make sense to me: how could the tests results say I have one disease, and the doctors another?
I learned that, in my case, the difference between AML and MDS is a question of semantics. MDS, formerly known as ‘preleukemia,’ is characterized under the ‘French-American-British’ (FAB) classification system as less than 30% myeloblasts (leukemic cells) in the bone marrow. Patients with a blast count higher than 30% are considered to have AML. Under the second system of classification devised by the World Health Organization (WHO), MDS is defined by less than 20% myeloblasts.
My biopsy results showed that I had 20% blasts in my marrow, meaning that by one count, I had Acute Myeloid Leukemia, and by the other, I had a late-stage form of Myelodysplastic Syndrome.
What was clear from the get go, however, is that my disease was high-risk and very advanced when it was discovered. By the time I was diagnosed I was already very ill. I was bedridden, suffered from painful mouth sores that made talking and eating very difficult, and had frequent infections due to my compromised immune system. My white blood cells (the infection fighting cells) and red blood cells (which deliver oxygen to your blood) were very low. The biopsy results also showed many chromosomal abnormalities in my marrow, with both an atypical number of chromosomes and structural abnormalities.
This all meant that I needed intensive chemotherapy right away and a bone marrow transplant (now called a stem cell transplant) as soon as my blast count could be reduced to under 5% and as many of the chromosomal abnormalities as possible could be erased. The only cure for my disease is a transplant. Although the chances of a successful transplant for someone in my situation are not as high as I wish they were (30-40%), I can only hope that I will land on the right side of the statistics.
In June 2011, I received one round of induction chemotherapy using a ‘7+3’ regimen (7 days of Cytarabine and 3 days of Daunorubicin). I spent almost 6 weeks in the hospital in ‘isolation’ and was finally released on July 7, 2011, 2 days after my 23rd birthday. My blood counts never quite recovered from this kamikaze blast to my system, and following this treatment, I was even sicker than before. A bone marrow biopsy showed that the treatment had had virtually no effect on the disease. I was completely bald, 20 pounds lighter, and dealing with increasingly painful sores in my mouth and throat. It was (literally) difficult to swallow the notion that these weeks of suffering had been for nothing.
One month later, I began a low-dose chemotherapy clinical trial, comprised of a combination of Azacitidine and Vorinostat. This treatment was supposed to improve my quality of life and allow me to live at home, while also aiming to get me into remission. As it turned out, this treatment proved, in some ways, more difficult than the first. I’ve now completed four rounds of the clinical trial over the past 5 months. I’ve had many side effects from the treatment (nausea, vomiting, chronic fatigue, neutropenic fevers, and mucositis). The most unexpected aspect of this experience, is how much time I’ve spent in hospital and unable to get out of bed. Since beginning this treatment, I have been hospitalized 6 times and have spent over 2 months of the past 6 months in the hospital for various infections and complications. On a more positive note: biopsy results in October showed that the treatment seemed to be working and that my blast count had been reduced from 20% to 4% and that there had been an overall decrease in the number of chromosomal abnormalities.
Today, I find myself at a crossroads. Last week, I received some startling news: my latest bone marrow biopsy showed that my blast count has gone up and that the number of chromosomal abnormalities hasn’t changed since October. This could mean that my disease is getting more aggressive and is no longer responding to treatment, in which case I would need to proceed to transplant immediately. My doctors have issued a second test and on Wednesday, I will have a better understanding of the situation.
If I’ve learned anything since falling ill, it’s that the road to recovery is rarely straight and without potholes. Although I never feel prepared for bad news from my doctors, I know to roll with the punches and to take things as they come, one minute–one day at a time.