Breast Cancer Behind Bars: One Woman’s Story

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Commentary Human Rights

Breast Cancer Behind Bars: One Woman’s Story

Sue Ellen Allen

I had been in jail for two and a half months when I learned that my breast cancer would necessitate a mastectomy. And I would have to do it alone: no pink pillows, no encouraging cards, no special foods. No comfort, period.

In October, our lives become awash in pink for Breast Cancer Awareness Month. We buy ribbons; we buy t-shirts; we buy bumper stickers. We race for the cure. We stand behind our loved ones battling the disease. We hear countless stories of women who have bravely taken the journey. But there is one population we hardly ever mention: those with breast cancer behind bars.

I was diagnosed with stage 3B breast cancer on Valentine’s Day, 2002, a date I’ll never forget. I had six rounds of chemotherapy before going to jail in Maricopa County, Arizona. As an everyday patient with cancer, the world is nice to you: Friends rally around you, your doctors are concerned and compassionate, and strangers have words of kindness when they see your head newly bald from chemo. But as an inmate with cancer, all that changes.

I had been in jail for two and a half months when I learned that my breast cancer would necessitate a mastectomy. I would have to undergo the stress of transport and the pain of surgery, followed by more rounds of chemotherapy and radiation. And I would have to do it alone: no pink pillows, no encouraging cards, no special foods. No comfort, period.

Imagine the feeling of shackles on your ankles, restricting your movements to baby steps. Even when you are very careful, you wind up with blisters from the weight of the hard, cold steel dragging you down. Now imagine handcuffs. They, too, are designed to restrict. They can chafe and cut, especially if the guard who cuffs you is having a bad day. He can clamp them on too tightly, and his bad day becomes yours.

Sex. Abortion. Parenthood. Power.

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It’s 2 a.m., and the dirty cream halls of the jail are bustling with the clang and clash of guards dragging chains behind them, attaching shackles and handcuffs to 50 female inmates to prepare us for the outside world. But unlike everyone else standing restlessly against the wall, I’m not going to court or trial. I’m going the hospital to have my breast cut off.

I’ve had the poison. Now it’s the slashing. Then it will be the burning. That’s what some in the community call chemotherapy, surgery, and radiation: poison, slash, burn.

One by one, the other inmates are hustled out for their ride to the courthouse. Finally, when everyone else has left, I hear my name: “Allen! Move it out!” Followed by the armed guards, I shuffle out to the jail van, jangling as I go. The backs of those vans are not designed for safety: Although there is a plastic bench to sit on, there are no seat belts, and I lurch each time we turn a corner. I cannot balance because my hands and feet are cuffed and shackled, so sometimes I crash to the floor.

After 20 minutes or so, we arrive at the hospital. Already bruised and shaken, I shuffle into another holding cell, exhausted, and wait several more hours in solitude. And I’m afraid too: Afraid of losing my breast, afraid of having surgery, and afraid of returning to the jail, with its hostile guards and indifferent medical staff.

At last, I’m escorted to the operating room. There, one of the guards removes my cuffs and throws a gown at me. Still shackled, I climb up on the table, where nurses begin the very painful search for my small veins. As I begin to go under, the shackles are finally removed from my ankles. The guards will stay in the corner to watch as my breast comes off.

Five hours later, I wake up in the jail ward of the hospital, a single corridor with gates at each end. I am bandaged and sore, but I’m alive. On this particular journey, I am not touched, except by the surgeons with their knives and the nurses with their needles. During my five days of recovery, I ask for a pastor or a priest, but no one comes.

When I finally return to the jail, though, the women there surround me with love. In addition to my breast, I’ve lost 28 lymph nodes. Back at the hospital, the surgeon told me that I need a pillow to cushion my arm and provide protection for the healing area. But there are no pillows allowed in jail.

I tell the other inmates, and they’re silent. I know they feel helpless; so do I. A few hours later, though, four young women enter my cell with an order.

“Close your eyes, Sue Ellen,” says one, “And hold out your hands.”

They’ve woven together their precious jail-provided supplies of Kotex into a pillow, even fringing the ends to give it that “designer” look—all so I would have one small source of comfort and love. It is 19 days before the medical department sees me to clean up my incision, take out the stitches, and look for infection. During that time, the other inmates share their crackers, juice, and commissary soda with me, trying to make me feel some semblance of relief as I recover.

This solace from my fellow inmates, however, was the only sympathy I ever received as I underwent treatment. I was never given any information about the medical care I needed, or what to expect from my chemotherapy, surgery, or radiation. Except for a few isolated instances of kindness, institutional employees rarely showed me anything but contempt as I suffered the side effects from the disease and my treatment.

Once, soon after my surgery, one guard cuffed me very tightly. I said, “I just had a mastectomy. You could be gentle.”

His response was, “I am being gentle: You aren’t lying on the ground, bleeding.”

Still, I was lucky. I was diagnosed with the disease before going “inside,” I had my medical records on hand, and I had done some research on questions to ask my doctors and ideal strategies for rehabilitation. For example, one thing I remembered from my reading was that I must exercise my arm, or the muscles would atrophy. I used the cinder block walls as my ruler to see how far I could “crawl” each day. No one on the medical staff ever told me to do that. If I hadn’t investigated beforehand, I would likely be unable to use my arm now.

Other women experiencing breast cancer behind bars, though, often have no such source of background knowledge. Some are denied the quality medical treatment they need for far too long, or never given it at all. These women fight bravely through pain, fear, exhaustion, and isolation. Many die.

Some people might think that these women “deserve it” for committing crimes, but I don’t think anyone deserves that kind of horrific treatment. It is devastating and demeaning; it robs us of our humanity and our hope. And it is reinforced and perpetuated by institutional policies that effectively promote a culture of apathy and disgust among officials toward inmates.

Battling breast cancer is a dreadful experience inside a jail or out of it, but there are many ways to stage the fight. It’s one thing for Robin Roberts, Christina Applegate, Cynthia Nixon, or Sheryl Crow to face cancer. They have the very best doctors, loving families, and loyal friends. The press and their fans regard them as heroes.

I wonder how they would handle the isolation that inmates deal with: the lack of information, attention, and care.

Women behind bars are mothers, wives, and daughters; many have been incarcerated for addiction or nonviolent crimes. While those with cancer should be healing, they are worn out fighting for treatment—constantly reminded that nobody cares, nobody cares, nobody cares.

In 2014, the American Cancer Society estimates, about 232,570 American women will be diagnosed with breast cancer; nearly 40,000 will die of it. Everyone who battles this illness is a hero, including those in jails and prisons. It is harder than you can ever imagine. I am free now, and miraculously still alive, but there are thousands I’ve left behind, alone and afraid with their disease.