March 16, 2015
The New York Times, WELL
“You are being deported,” a surgeon announced to me last fall. That’s a scary thing for a child of two immigrants to hear. But he was referring to the removal of my port, a medical device implanted just beneath my right collarbone — a gateway for the dozens of rounds of chemotherapy, antibiotics and blood transfusions that have entered my body since I received a leukemia diagnosis at age 22.
I love a good pun, but I wasn’t in the mood for laughter or lightness that day. After three and a half years of cancer treatment, I no longer needed the port. My doctors had finally pronounced me in remission. I had thought I’d want to celebrate or dance a jig in my hospital gown or throw a rager when I got there. But it didn’t feel anything like the endgame I had imagined.
It took me a long time to be able to say I was a cancer patient. Then, for a long time, I was only that: A cancer patient. Now that I’m done with my treatment, I’m struggling to figure out who I am. On paper, I am better: I no longer have cancer, and with every passing day I’m getting stronger. The constant flood of doctor’s appointments, blood tests and phone calls from concerned family and friends have trickled to a slow drip. But off paper, I feel far from being a healthy 26-year-old woman.
My disease has left countless invisible imprints in its wake: infertility, premature menopause, a thyroid condition, chronic fatigue and a weakened immune system that sends me to the emergency room on a regular basis. And that’s just the short list. Then there are the demons of depression and the fears of relapse that sneak into my head just when I think I’ve gotten a grip. The rattle of a cough in my chest. A strange bruise on the back of my leg. A missed call from my oncologist. Each of these triggers rips me out of my fragile, new reality leaving me to wonder: What happens if the cancer comes back? Will I ever feel normal again? And most daunting of all, how do I move forward with my life?
Writing about all of this has not come easily to me. It is hard not to speak in clichés about cancer. It can be even harder not to feel as if I have to live up to those clichés. I sometimes feel a deep sense of guilt for not doing a better job of making lemonade out of metaphorical lemons. I know that I am one of the lucky ones, and I am deeply thankful to be alive. In writing about the problems I am facing now, I worry about sounding ungrateful — or worse yet, insensitive to my friends in the cancer community who may never go into remission. These fears color the unexpected challenges that emerge during life after cancer, and can overwhelm the need to talk about them. After all, I’m supposed to be better. So why don’t I feel better?
When I finished my last cycle of chemotherapy, in April 2014, friends and family congratulated me on being “done.” What they couldn’t know was that in some ways the hardest part of my cancer experience began once the cancer was gone.
The first few weeks after I finished treatment unfolded like a circus of horrors. I was hospitalized four times for Clostridium difficile, or C. diff, a life-threatening intestinal infection I caught because of my weakened immune system. My relationship with my boyfriend of three and a half years came to an end. And Melissa Carroll, one of my best friends, whom I had met through the blogosphere, died of cancer at age 32.
While in treatment, I had been surrounded by the world’s best army: my supportive family and friends and a brilliant medical team who had worked tirelessly to keep me alive. The goal had been to cure the cancer. Now that I had survived the “cut, poison, burn” of the disease, I no longer had the cavalry running after me. Suddenly, I found myself standing dazed and alone in the rubble, wondering what had happened and where everyone had gone.
I fell apart the way the author John Green says you fall in love: “slowly, and then all at once.” I was discharged from the hospital on May 16, 2014, which coincidentally was the day my ex-boyfriend was scheduled to move out of the apartment we shared in Manhattan. “You should cry,” I kept telling myself after he left. But I couldn’t. I wandered around the apartment, calmly inspecting the empty closets and dresser drawers left behind. In one of the drawers I found a dusty, old pack of cigarettes. I knew better, but I lit one up anyway. I smoked it slowly, sitting cross-legged on the kitchen floor, my hospital bracelet still wrapped around my wrist. The inner scaffolding that had kept me strong and brave during my treatment had crumbled. I no longer wanted to be anyone’s inspiration.
I’ve spent the last year of my life searching for Suleika B.C. (before cancer). I’ve looked for her all over New York City — the old bars she used to frequent, the coffee shop where she had her first date with the ex-boyfriend, the apartment above the Pearl Paint sign on Canal Street that she shared with 10 roommates her first summer out of college — but the more I look, the more I’m beginning to realize she no longer exists. There is no going back to my old life. The problem is I don’t know how to move forward either.
I’m not alone in feeling this way. A growing body of evidence suggests that cancer survivors continue to struggle with medical, financial, professional and psychosocial issues long after the end of their cancer treatment. For many, the experience provides a renewed sense of life and purpose, but the task of rebuilding your life after something as devastating as cancer can also be a deeply disorienting and destabilizing one.
A report last year by the American Cancer Society, in collaboration with the National Cancer Institute, estimates there are almost 14.5 million cancer survivors alive in the United States today, and that number will grow to almost 19 million by 2024. Although more and more Americans are surviving cancer thanks to early detection programs, new treatment regimens and awareness campaigns, much remains to be learned about the short- and long-term issues faced by survivors. With long-term survival comes a new challenge: how to keep cancer survivors healthy and emotionally stable after treatment ends.
“We like to think of the end of cancer treatment as the closing of a chapter, but what most people don’t realize is that the emotional struggle continues long after,” Dr. Kevin C. Oeffinger, a primary care physician and director of Memorial Sloan Kettering Cancer Center’s adult long-term follow-up program, told me recently over the phone. “Feelings of post-treatment depression and anxiety are amazingly normal. I would go so far as to say that if you don’t have them it’s a surprise.”
I spoke with Xeni Jardin, a journalist who writes frequently of her experiences with breast cancer, about what life after treatment has looked like for her. I have been following her on Twitter ever since my diagnosis, and her brutally honest, humorous and often heart-wrenching writing has long been an inspiration to me.
“I have learned since the day of my diagnosis that cancer affects all of who we are,” Ms. Jardin told me. “There was no aspect of my life that wasn’t torn apart as my body was literally torn apart. In my case, after my treatment ended, I experienced mental health issues that were more intense and more debilitating than I’d ever experienced before in my life.
“This thing that we experience that is casually referred to as post-treatment depression is much more than just that. It has many facets: spiritual, psychological, social, medical and financial, among many other things.”
Ms. Jardin went on to describe the increasingly frequent panic attacks she began experiencing while driving on a Los Angeles freeway and bouts of depression that prevented her from leaving her bed or her house for days at a time. “Somebody encouraged me, in a way I was ready to hear, to get professional help,” she said. “And so I called my hospital, and I said: ‘Hey, I want to kill myself. I keep finding myself in these cycles of panic where I want to die, and I’m not sure why I bothered with treatment. I need help.’ ”
Ms. Jardin spoke with a social worker in the oncology division who reassured her that someone would get back to her soon, but no one from the hospital ever did.
She followed up with the hospital a few weeks later and scheduled an appointment. “I spoke with the same social worker, who got very quiet when she realized that neither she nor anyone else had called me back.” Ms. Jardin was able to get an appointment the next day with a psychiatrist who diagnosed her with chronic low-grade depression and anxiety caused in part by Tamoxifen, a medication that is intended to reduce the risk of developing breast cancer again and that she will be taking for several years. But there was one catch: The psychiatrist couldn’t treat her. Because of hospital policies and budget cuts, he was allowed to provide psychiatric care only for patients in active cancer treatment. Ms. Jardin would have to seek treatment somewhere else.
“The medical system that saved my life wasn’t able to help me not want to take my life,” she told me. “I have developed a deep love and reverence for the oncologists and nurses, and I believe that these people really do understand that, in some ways, it never ends for us. But I also believe that collectively the system of care failed to prepare me for the mental health crisis that I would experience. There’s no excuse for that.”
While an increasing number of cancer treatment centers have begun offering post-treatment care plans and support groups to help patients navigate these challenges, many patients continue to fall through the cracks. “Sometimes we do a good job of preparing people for this, but often we don’t,” Dr. Oeffinger said. “We need to do a better job.”
“Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick,” Susan Sontag famously wrote in Illness as Metaphor. But she doesn’t talk about this no man’s land that exists between the two kingdoms, inhabited by people like me who are neither sick nor well. It is a different kind of deportation than the one the surgeon was referring to: It’s a journey into the wilderness of survivorship. This time I’m finding that there are no protocols or discharge instructions, no roadmaps or 12-step plans to guide me back to the kingdom of the well. The road back is going to be my own.
Suleika Jaouad writes about the challenges faced by young adults and her experiences with cancer.
View the “Life, Interrupted” video series and read previous “Life, Interrupted” columns, to learn more about Ms. Jaouad’s journey with cancer.