Looking Through a Breast Cancer-Stained Glass Window
This piece is about one family’s perspective on their mother getting and battling breast cancer. I wrote it after interviewing my parents for an Illness Narratives class to better understand our family’s narrative of my mother’s cancer. Of course, it is “stained” by my own perspective. Just like a stained glass window, each member offers a unique viewpoint that sheds light on a certain part of the illness experience. Each part of any story is a small fragment of a larger collage that helps onlookers understand a cohesive, beautiful whole. This piece aims to represent that fragmented work of beauty that was, and still is, my family’s illness narrative.
Revelation
Few Things Worse I knew I had cancer from the moment I felt that parasitic little lump that took residence in my breast and sucked its lifeblood from my breast tissue. I touched it, gently, and then stopped touching it at all. What if I pushed the cancer out into my bloodstream? What if massaging it encouraged the little bugger to grow, made it think I was affirming its presence with my tender touch?
I just knew it couldn’t be anything else. It was a primordial fear. Breast cancer was the one illness that I always dreaded and spoke of in tremulous, apprehensive, “what if” questions. I had been religious, too, even devout about my health. Damn near obsessed with having my husband check me for lumps. I never missed a yearly checkup. Never smoked, rarely drank. I suppose I could have exercised more, but I ate well.
I decided that stress was the cause… and God. Was I being punished? Dare I say that I blamed God for this? So common a thought, I know, but He was so perfect a scapegoat. Blaming a tame scapegoat offers such relief, but God was not behaving. It was as if this naughty scapegoat had turned around and bit me in the ass, maybe the breast, really, and then took pleasure in it with a wicked laugh.
I knew it was cancer. It had to be. It couldn’t be anything else. As I sat in front of the doctor, only one thought was going through my mind. I rehearsed so I’d be ready. The phrase looped on a continuous circuit. It was like a song, a melody with its own distinct rhythm: “You have cancer, you have cancer, you have cancer.”
“You have cancer.”
“I have cancer.”
The doctor’s words and my thoughts synchronized into the apex of my opus, the harmony that the entire piece hinges upon, the chord on which you hold your breath, waiting for resolution.
His Prayer Heavenly Father, Lord, please help me. Help my wife, help my children. I don’t know if I can do this. Please give me strength. Please don’t let my wife die.
The Daughters My parents were both home when my two sisters and I got home from school on a Friday. They were never both home when we got home from school. Something was wrong.
Alli: What’s wrong?
Dad: Sit down.
We sat. Together.
Dad: Your mother had her doctor’s appointment today to go over the biopsy results. She has breast cancer. (Pause). I know this is going to be really hard for you girls, but it’s going to be OK. We have a lot of questions that can’t be answered yet. She has to get her breast removed. That is going to be OK, too. We are leaving on Monday to fly to the States, and she has an appointment with some really great surgeons on Tuesday.
Jenni: (In a panicky voice) Is Mommy going to die?
Alli: No, Jenni, she’s not going to die.
Mom: (Crying, just a little, with silent rolling tears). I could die.
Dad: Desi, you are not going to die. Girls, she is not going to die.
Mom: (Quietly, more to herself this time). I could die.
Dad: Here is the plan of attack. (Note: Dad is a man with a perpetual plan of attack. An Army officer, he divides challenges into goals and objectives, especially in relation to his family. At times like this, his training makes things easier. It is a reversion to what he knows, to what he’s comfortable with). Jenni will be coming with us because she isn’t old enough to stay in the boarding house and we don’t want to separate her from Mom. Alli and Kaiti, you’ll go into the boarding house while we are gone. I know it will be hard, but Mommy and I want you to stay in school and we have faith that you can do it. Can you do it?
Kaiti: (Crying) I don’t want to do it.
Alli: Yes, Dad, we can do it. Kaiti, it will be OK. I’ll look after you.
Kaiti: I’ll want Mommy. Mom: I’ll want you.
Tribulation
Row of Lights If I’m going to die from breast cancer, please, Lord, let it be now. Let me go to sleep in my operation and not wake up. If I’m going to die, don’t let it be after I’ve given a long fight with lots of pain.
The Operation I had seen pictures from the operation. I supposed the surgeon would naturally want to document the process, the moment when he shot the first bullet in the war against my wife’s cancer. The surgeon, like a master butcher, had flayed open my wife’s breast. Proudly, he took a picture of the extracted flesh, sunny side up, so that the fat, muscle, and cancer tissue were displayed.
“We got all of it”, he proudly proclaimed.
Should I feel triumphant?
Anguish The sound of beating water against the fiberglass walls of the shower was not loud enough to stifle my wife’s sobs. This was not a cry that wrinkles the sufferer’s face at the eyes and forehead. It was a cry that twists and contorts the sufferer’s entire body into the mangled posture of pain, loss, and despair. The anguish that was pouring from my wife’s soul wrapped its unwanted arms around my own heart, and began a suffocating squeeze.
In this moment, she looked far different from the woman I married. In a soft voice I chanted, “Desi, Desi, Desi,” both to calm my wife and remind me that she still was, at least at her core, the woman I married.
Naked together, I focused. With one arm I held my wife under her good arm to support her, my other hand cupping handfuls of water, pouring them over her head. Careful, careful, can’t get the incision wet yet. It, the scar, stared at me, but I was stoic.
“Desi, Desi, Desi.”
Hair I could not get away from my cancer. My cancer had become my identity.
During the day, the cancer was still with me. Every interaction would remind me of my cancerous state. I hated it when people said, “Desi, you look good!” I knew that I didn’t look good, definitely not great. I looked like I was sick. I looked cancerous. For me, the attempt at kindness was instead an ugly and public recognition that, yes, this is a woman who is fighting cancer. We must affirm her. Support her. You don’t go around telling normal people that they look good.
Honestly, worst of all was losing my hair. I could hide my lack of breast with a fake implant that fit into my bra. The wig I used to cover my bald head sufficed only if the onlooker was about five feet away. Any closer, and my cancerous status was revealed. The wig was shaped well, but unmoving. The color was about right, but its texture was coarse and somewhat straw-like. It had a funny, plastic shine to it.
Not even the night offered respite from the cancer. Wasn’t it enough that I thought about it constantly during the day? No. Cancer stayed with me like the annoying song that gets stuck in your head and won’t leave, or the hiccups without a remedy.
Waking up in the middle of the night, I could feel my silk nightgown brush against my intact breast. What a glorious, feminine feeling. Yet the right side of my chest was empty. When your breast is taken because of breast cancer, the doctors relentlessly scrape every last cell of tissue off your chest wall. You become flatter than a pre-pubescent girl. The thin skin that was stretched tightly over my right rib cage was void of feeling, numb, and scaly from rounds of radiation. I stumbled to the bathroom.
As my sleepy eyes adjusted to the light in the bathroom, my reflected image came into focus. In the mirror, I saw a woman I did not want to be. The same silk nightgown that once looked beautiful lying against my pale
skin hung awkwardly on my deformed frame. Filled with a breast on the left side, it hung limp across my bare right rib cage. My head was bald in patches, some hair still hung on with a death grip to my scalp. The same way I was holding on with a death grip to my life. I silently cheered on each remaining lock. Hold on, hold on.
Self-Righteousness In many ways I made my mother’s breast cancer about me. I was proud of the way I put on a stiff upper lip. I thought my mother, and certainly others, would admire such immense strength in a sixteen- year-old girl. I would exceed everyone’s, and my own, expectations.
I did not like boarding school. I felt like I could not relate to the other girls who lived there. We had more in common than I wanted to admit: we were motherless. Our abandonment should have united us. But I felt like my family’s separation was distinctly different. It was not a choice: it was forced upon us. I considered myself a refugee, exiled to a place I had to call my home. I was lonely. I did not vocalize these discomforts often.
One night, the picture of my family that I taped to my wall fell down into the crevice between my bed and the wall. In the morning, I noticed the empty space and a panic surged within me. My family! What evil plot was this that destroyed any tenuous attempts I had made to keep my family close? The injustice! I fixed my makeup before heading out the door to class so no one would know I had been crying.
Deliverance
Expectations Recovery is an interesting concept. I expected my wife to recover from her illness much faster than she did. She handled most of the physical challenges with valor and courage. The chemo did not entirely wreck
her physically. She still worked quite a bit throughout the chemo. I was proud.
But my wife’s spirit had been crushed. She thought about death and cancer all the time. Her wounds healed, the rounds of chemo subsided, she began to gain her hair back, and I expected her to come out of the emotional despair that breast cancer had put her in. I needed her to come out of this. We all needed it. We were tired, in many ways, of repeating the lines, “No, you are not going to die”. This chant had become our anthem. It was the family’s new mantra.
I was getting angry, and Desi knew it. It was the aftermath that hurt our marriage. Collateral damage…
Non-Speakables In my family, there is one thing that you don’t say. You do not say,
“I hate you.” I’ve said it probably eight times. Three times to my mother, and five times to my sisters. Every time I have said it, it hangs in the air for a split second before it delivers its nasty uppercut. In that split second, I always wish that I could take it back.
I’ve found another thing that you don’t say. You do not say that you are angry at your mother for how she dealt with her breast cancer.
You do not say she disappointed you. You do not say she is not your hero. You do not say you are bitter, or angry. You do not say she made you scared. You do not say that when you think about yourself getting breast cancer, you pray you’ll handle it differently than your mom. These are non-speakables.
Mom’s Words, Nov 4th, 2008 “I don’t feel like I changed as a result of having breast cancer, and that worries me. Did I miss something? I still get stressed out, and feel like maybe I missed learning something. I hear about people who totally change their lives as a result of cancer (like they eat organic foods, or don’t eat sugar anymore, or exercise religiously) or they say that cancer was the best thing that ever happened to them! I know for certain, without a doubt, that cancer was NOT the best thing that ever happened to me.”
Thoughts on Writing this Narrative
I was surprised at how difficult writing this narrative was for me. The process of asking my parents about their experiences and feelings towards my mother’s breast cancer was eye opening. Many of their answers were surprising, and it was difficult for me to integrate their views with assumptions that I had already made.
As I tried to convey my own emotions honestly, I continually thought about how much of this I’d want to reveal to my mother. On one phone call home, my sister asked me what my narrative project was about. My mother overheard, and interjected, “It’s about me being Alli’s hero.” My mom isn’t my hero, but that does not diminish what she went through or how much I love her. I won’t tell her she is not my hero. I’ll tell her that I’m proud of her for getting through cancer, because she has. She came through it in the end. I’ll tell her I’m thankful that her breast cancer is behind us. I’ll tell her I’m proud to be her daughter and that I respect her.
Most of all, I’ll tell her I love her.
Alli is a fourth year medical student at Duke University. She hopes to pursue training in Medicine-Psychiatry in the United States Army.
