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Greetings from CancerLandWriting the Journey to Recovery
By Alysa Cummings
iUniverse, Inc.Copyright © 2012 Alysa Cummings
All right reserved.
Chapter OneYou are Here
* * *
Even when you thought you were climbing you had already arrived. —Erica Jong, "You Are There"
From the Medical Record
As you recall, she is a 45 year old perimenopausal white female who noted a palpable density in her right breast several weeks ago. Left breast was mammographically unremarkable. There is no family history of breast or ovarian neoplasia. She is single and has no children. Appears her stated age. She is alert and comfortable, in no apparent distress. Vital signs are stable. Thank you for allowing me to participate in the care of this most delightful patient.
His name is Boris. He is trying to kill me. I won't let him.
And so my CancerLand journal began: with three short sentences, a stream of words that had been swirling around in my head for days. Days that otherwise had been spent in and around the health care delivery system visiting assorted doctors (gynecologist, radiologist, breast surgeon, oncologist) for painful tests followed by frightening results. I remember endless crying jags and repeat phone calls to my insurance company. In my bedroom at night I would stand in front of my full length mirror, my shirt hiked up high on one side, and stare at my upper body—shocked and wide eyed, hypnotized by my reflection, all the while muttering to myself, "so this is what cancer looks like. So this is what cancer feels like."
His name is Boris. He is trying to kill me ... I repeated these words under my breath like a prayer, my very own disease mantra. Call it the ravings of the recently diagnosed, but the words helped me focus—on the next decision, the next appointment, the next step on the path. The words also kept me slightly sane, all things considered; imagine talking yourself down from the ledge. The words begged to be tapped out on a keyboard, so I followed the urge, liked how it made me feel in the moment and then just kept typing.
I hate Boris. Boris has been lurking in my chest for ten years possibly, hiding, madly multiplying, growing, only now choosing to make his obnoxious presence felt.
Who was Boris? (Yes, I confess that I named my tumor, personifying him as Boris Badunov of Rocky and Bullwinkle cartoon fame). Writing about Boris and plotting his imminent demise helped me wrestle with my first real demon—the fact that I had no control. Never had, never would. Over anything related to cancer, which by definition means life out of control.
Boris. Foreign. Evil. Pint-sized. If I can picture my enemy I can fight him; at the very least I can write about him. Am I writing for my life?
I fantasized that I could somehow use my computer to craft a story with an upbeat next chapter or fairy tale happily-ever-after ending. Looking back, that's the only explanation I can come up with, why I felt so compelled to create a record of my day-to-day experiences as a cancer patient. The one thing I could control were these words that crowded each other as they quickly appeared on my computer screen; these stories that flowed through my fingertips in such a manic rush; these traumatic adventures that happened to me in a place I began to call CancerLand.
CancerLand: it's this parallel universe, I swear, separate and apart from the rest of life as I once knew it. How did I end up in this wacky Bizarro World filled with freaky language and even stranger rituals?
It was late October, 1998 and I remember being stretched out on my couch in the den watching the evening news. There was one of those predictable stories about Breast Cancer Awareness Month that ended with the reporter promoting monthly self-examination and my hand moved with a mind of its own to my right breast. And that's when I felt it: a lump.
In the Name of Pinkness
I'm at the neighborhood Acme, standing in the produce aisle, reaching for some shiny red MacIntosh apples, when I hear a female voice behind me:
Remind all the women in your life to get a mammogram ...
Startled, I drop the fruit into my shopping cart, look around the store, and try to figure out where the voice is coming from. Suddenly I spot a monitor hanging from the ceiling, right over the potatoes, onions and shelled peanuts. On the screen, an attractive blonde in her mid-thirties is sharing the importance of breast health in a serious voice with a matching expression on her face:
Women over forty should get mammograms every year ...
Who would argue with her? No one. Not me, certainly. Early detection is key. It's literally lifesaving information that needs to be broadcast to the widest possible audience.
But that day at the Acme, standing in the produce aisle staring up at the monitor, I shake my head and angrily mutter two words under my breath: enough already! Thanks to Supermarket TV, I can't even do my food shopping in peace without having to think about breast cancer.
Yes, it's October again. Fall has arrived in rich shades of orange, brown and yellow. Everywhere you look there are signs of the seasons changing: big colorful piles of leaves raked to the curb, mums and pumpkins artfully arranged on the neighbors' front steps.
But in CancerLand this time of year, there's a totally different color scheme. October is the pink month. Truly, madly, deeply pink, everywhere you look: pink ribbons, pink tee shirts, pink hats. Shop online. You can buy pink ribbon stuffed animals, pink ribbon bracelets, pink ribbon shoelaces. On October 1st even Yahoo got involved, looping a virtual pink ribbon around the first letter of their name.
This month there's also dancing, racing, walking and driving for the cure. Go ahead, pick another verb I haven't thought of, and someone else probably already has, and created an event for the cause, all in the name of pinkness. Now, please understand: I have nothing against fundraising, especially if it means we might actually get closer to a cure for cancer in my lifetime. What grates on my nerves is that so much of this well-intentioned effort is jam-packed into the 31 days of October.
Open any newspaper or magazine during the month of October. Odds are there's a human interest story featuring a breast cancer survivor (or two). In these articles, the words fight, brave and battle will no doubt appear—sometimes in the very same sentence. It makes me more than a little crazy.
On TV, expect the evening news to spotlight a new drug in the War Against Cancer. Or discuss an extremely unappetizing food that you have never heard of before that is now being touted for its anti-cancer properties. Change the channel: Oprah's got Christina Applegate and Nancy Brinker on her show, both crying on camera, at the same time. Seriously, when it comes to Breast Cancer Awareness Month and its insidious pinkness, there's truly nowhere to run, nowhere to hide.
Houston, we have a problem. I'm on October pink overload. And there are a few good reasons why.
Breast Cancer Awareness Month puts a spotlight on breast cancer. (I'm guessing the spotlight is pink, but I could be wrong). That fact by itself is incredibly ironic, because for so many of us on this bumpy road to recovery, breast cancer rarely moves very far from center stage. Survivors these days are strongly encouraged to think of breast cancer as a chronic disease. Which means it's like a hawk flying wide, sleepy circles in the sky high above the earth. To take the metaphor one step further, during the entire month of October, that majestic predator lands, makes a huge nest on my head and squawks loudly non-stop for thirty-one days straight. I'm not kidding. Am I the only breast cancer survivor who feels this way? One thing I know for sure; I don't need an entire month every year to remind me of things I can never, ever forget.
Damn October—the non-stop pinkness, the endless breast self-exam reminders (in the shower, laying down, standing up)—it makes me self-conscious, knocks me totally off balance and shatters whatever "new normal" equilibrium I've managed to build up over time. That's such a shame, because this year should be a time for serious celebration. Let the record show that it's been ten years since my cancer diagnosis. (... and I'm feeling more than a little superstitious as I type these words and see them appear on the computer screen. Do I dare plan a Decade in CancerLand Party and risk angering the gods that keep me N.E.D.?)
But when all is said and done, here's the real October demon. Breast Cancer Awareness Month has a way of putting my CancerLand experiences on instant replay. And, unfortunately, all of the intense feelings that go along with this traumatic chapter in my life play back too.
In late October ten years ago, I remember being stretched out on my couch in the den watching the evening news. They were running one of those predictable stories about a breast cancer survivor that ended with the reporter promoting monthly self-examination. My hand moved with a mind of its own to my right breast. And that's when I felt it: a lump.
By Halloween, I was flat on my back on the gynecologist's examination table, staring up at the ceiling while the doctor stuck a syringe in my chest to aspirate fluid from the lump.
I tried to describe that night in my journal:
The holes in the ceiling tiles shift crazily in and out of focus. Dots. Holes. Shadows. Connect the dots. I squeeze the nurse's hand much too tightly and wonder if all the sweat I feel is mine. I smell myself; my own sticky fear. I don't like it, the doctor says, finally removing the needle. It's very bloody. Not acting like a cyst at all. I sit up and look down at myself. The bandage on my chest is a small square with a bright red circle in the center. The flag of Japan, I think to myself. The doctor tries to reassure with lots of nervous pats on my leg. Then the door slams, she's gone and I am alone, cold and shaking all over. I pull on my jeans and trash the paper gown. Something has changed. I know it. Feel it intuitively. For the first time I have seen cancer reflected in a doctor's eyes. I have a feeling it won't be the last ...
By Thanksgiving I was recovering from my first surgery and being scheduled for a second one because the margins weren't clear. By the eighth day of Hanukkah, I was through my first round of chemo. As thousands of people screamed for the ball to drop in Times Square to welcome the New Year, I watched them on TV and felt the hair on my head release in sections and slide down my back in clumps. Within days I was bald, without an eyelash or eyebrow in sight. All of this happened ten years ago. But when Breast Cancer Awareness Month comes around again, all dressed in pink, I have to stop for a moment and carefully check the year printed on my calendar; it still sometimes feels like it all just happened yesterday.
Maybe my support group buddy Cecelia will be my angel and help me get through Breast Cancer Awareness Month this year. She recently shared a poem she wrote that spoke to me so strongly. "Everywhere I go I carry cancer with me," she wrote. "Now it's not so heavy."
I guess I know what I need to work on before next October.
I am writing to say I'm sorry. I know my apology is almost 11 years overdue, but I mean it. I really do.
With so many doctors on the team working at the imaging center, what are the odds that you would be the one reading my films this year? But as luck would have it, after my yearly mammogram last week, I walked down the hall to chat with the radiologist on call like I always do. And there you were in your long white coat, standing in the semi-darkness peering up at the screens filled with ghostly compressed breast images. No one was more surprised than me.
You must remember me. How could you ever possibly forget the patient who pushed you across the room?
Such an awful day (what I now refer to as the Eve of Diagnosis), and yes, I remember all the details vividly. After reviewing the initial films, you sent me back for more views. Then I had an ultrasound. Next, you stepped into the room and walked over to talk to me.
I don't know, you said, your voice trailing off with uncertainty. There's something there, but I don't know. I just don't know. You said those same words over and over again, in a low voice, almost under your breath actually, as if you were talking to yourself, with this incredibly serious expression on your face. But Doctor, I was sitting right there on the edge of the examining table facing you.
Unfortunately I heard you loud and clear.
Maybe there were too many I-don't-knows that set me off. I don't know for sure. What I do remember is a metallic taste of panic in my mouth, along with a pounding pain in my head. In the moment there was too much cancer uncertainty for one person to cope with and stay sane. And since I felt so scared, so powerless, so alone and couldn't push away the fear that there was a malignant tumor growing somewhere in my right breast, I did the next best thing.
I put my hands on your shoulders and gave you a shove. (an-Elaine-Benes-from-Seinfeld-get-out-kind-of-shove). I pushed you away instead.
Crazy time: in what seemed like slow motion, you stumbled backwards, your eyes wide with surprise. Seconds passed and once you regained your balance, you quickly left the room without saying a word.
Fast forward—one mastectomy, eight rounds of chemo and thirty-five radiation treatments later—and there we were together again last week, face to face. And in that highly charged moment, I couldn't push any words of apology past my lips. I was much too embarrassed. Especially when I noticed that after our eyes met, without missing a beat, you coolly rolled over an office chair to fill the open space between us.
Just in case ...
This Breast Surgeon
They look at the films together. Oh, I don't like this. I don't like this one bit, he says. This breast surgeon points to her x-ray traces lazy circles with his fingertips, reaches for a small white writing pad (the name of a pharmaceutical company printed across the top); starts drawing breasts. He quickly creates a female torso— just one unbroken line from his black felt tip marker. A moment later a straight shorter line turns into an arm. A curved half circle becomes a breast. Another much smaller circle appears. Suddenly there's a nipple; then two: a matched set. In a stupor of silent anxiety, she watches him sketch, thinks about Picasso; drawings so evocative with one simple, continuous line. And as she spectates, a soothing mantra spins through her head: this man has sketched millions of breasts. He is good at drawing breasts. He is good at cutting breasts. He knows breasts. This breast surgeon.
His call comes at work; I punch hold and slam the door shut. I have bad news. It's cancer. One hand that looks vaguely like mine holds the phone to my ear. The other takes notes on yellow lined paper. Cancer. I write this word with care, put it in a box. Such a big idea—little Miss Straight-A student— I underline it twice,—flash on my need for a yellow highlighter pen—hear a voice I think I know beg instead: give me something, get me through this day. "Treatable," he says. I press the word into my chest. "what you've got is treatable," sweet lifeline, I hold on tight: I twist, I spin, I swing.
For some reason, that's the made-up word I started using to describe my experiences as a cancer survivor: CancerLand.
CancerLand could refer to places like the Chemo Lounge, that room at the end of a long hallway on the fourth floor of the hospital; a place filled with big blue barcaloungers, clicking rapid infusers and blaring televisions hanging from the ceiling.
I was also thinking about CancerLand when I visited a funky shop in the mall named Wig-a-Doo before my hair fell out; a store where the wigs—straight, curly, short, long, blondes, brunettes and redheads—were lined up on shelves with tags displaying each of their names.
Excerpted from Greetings from CancerLand by Alysa Cummings Copyright © 2012 by Alysa Cummings. Excerpted by permission of iUniverse, Inc.. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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