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Dancer Cancer, Part Two

by Najia Marlyz
posted July 29, 2011

In essence, memorable dancers make music visible with their bodies! However, unlike musicians, when the dancer’s instrument wears out, becomes defective or broken, we cannot go shopping and simply purchase a new instrument. We often make magnificent efforts and campaigns toward the healthy and efficient maintenance of our bodies to elongate the projected lifespan of our precious dance careers. Many of us have been extremely successful in our battle, not only with our dance but in the maintenance of our careers through health, diet, exercise, and fortunate genes, but what happens to the dancer who loses her battle? In Belly dance, unlike Ballet, theater, or the cinema, “out of sight” usually means “out of mind” and “S.O.L.”!

I had had to face the terrifying question in my own career and life only a few months before when dealing with Melanoma surgery on the top of my foot. “Would life be worth living, having to hop about on one foot?” I had wondered. My answer usually had been yes, but sometimes it had been negative, depending on my level of pain and disappointment. The specter before me was one in which I, as a dancer and dance instructor, could have lost my right foot to the dark and dangerous Melanoma cancer. I had survived that ordeal, during which my skin graft had turned necrotic, and pain had made it nearly impossible for me to walk, let alone dance.

Still, the human heart is woven with threads of hope, and mine did not doubt that if I could make it through the onslaught of doctors, surgeries, pain, and gymnastic therapy, I would, someday dance again.

About six months later, while attempting to dance once more although my body was pathetically out of condition, I found that I could still dance; so that became my plan. It was my intention to return to teaching, coaching, dancing, and going to all the festivals and haflas that make the world of Belly dance so colorful and alluring. 

Random MamI began to recondition my body, and because it seemed prudent to start with a clean physical condition and healthy attitude, I scheduled my yearly mammogram. Mammograms often seem more an annoyance than any big deal; that is, they may seem so until you hear a radiologist say quietly, “We need to do a magnified mammogram before you leave today.” Still, I did not have any feelings of terrible foreboding as the radiologist said that the head radiologist also wanted to have “a word with me”. Her word was “biopsy”, and she sent me home with a packet of information about what was going to happen next.

breat ripperBiopsy of my breast tissue was a much more complex procedure for me than the biopsy of my foot Melanoma had been. I would have to go to another hospital in a nearby city and this same radiologist would do what was called a “Stereotactic 6-core Needle Biopsy”. This core needle would remove samples of tubular tissue from my breast in 6 separate sites in close proximity–rather like a core sample that geologists take from the earth. The samples were to be removed while I was lying face down on a pneumatically elevated table with one breast hanging through a hole in it. (In my mind, it resembled some sort of medieval torture device.) A tiny numbered metal tag would be inserted and left inside my breast that would identify the site. (I remember asking if it would set off the alarms at the airport.) Then, I would wait until one or two days hence, when my general practitioner would be able to interpret the report of UCSF’s laboratory findings.

The whole procedure had me quaking in my dance shoes! What if I had breast cancer? Would I die? Would I live a few more years with one breast, and then die anyway? Would I have the “lump” (that nobody could feel) surgically removed and go on with my life and my dance career? Would surgery leave an ugly scar or even a breast? Would I even care to dance anymore —to put on a costume and express the emotions contained in music? Would I be able to put on a glamorous costume without feeling self-conscious? My mind went rampant with questions, and I had not yet heard any results of my breast biopsy!

Still, after a few days had passed without word from my general practitioner, and I knew he would be gone over the weekend as usual, so I phoned his office and insisted to speak with him “sometime today”. His telephone dragon asked me, “Who did you say you were, again?” I pronounced my name for her once again and said that I wanted him to tell me the results of my breast biopsy. “Oh, yes… Well, I have already made an appointment with your surgeon.” “Surgeon? What surgeon? Surgery for what?” I shouted. “Your breast cancer,” she answered, matter-of-factually. My blood ran cold. Cancer! Breast cancer! I could barely speak. “Are you still there?” she asked.

“Don’t you think it would have been better if the doctor had called me and told me that I have a cancer before you made any appointment with a surgeon?”

I squawked, from a throat that had almost closed with fear. “What surgeon did you call? In what city? How soon is this appointment scheduled? How did you make an appointment for me without consulting with me?” I finally went silent, angry and frightened all at once.

“Well, do you want this appointment or not?” She could barely conceal her irritation. That was the beginning of the worst experience of my life that lasted throughout an entire year. Its ripples in my time will be with me the rest of my life.

My experience with breast cancer was and has been extremely unpleasant. Undoubtedly, every-one’s experience with breast cancer is unpleasant and frightful. However, all of my experiences in back-stage dressing rooms and repeatedly putting my body “out there” on the stage over years and years of gigs, the hardships of travel, and stage bravado in the face of performances unexpectedly going awry helped me face this personal catastrophe. Nevertheless, nothing could prepare me for the pain, discomfort, humiliations, and lackadaisical attitudes of the people in charge of my potential cure. In a misguided attempt to protect one’s sense of propriety, privacy, and modesty, medical workers who have the best of intentions cause you to feel prudish and ridiculous about your body on repeated occasions.

It was astonishing to learn that I would have numerous life-changing decisions to make about my own treatments that seemed to me like pure gambling.

I realized that I lacked fundamental knowledge about breast cancer and would have to do much reading and learning about ductile carcinoma in situ, DCIS, so that I could make, at least, semi-informed decisions for myself. I thank my lucky stars for the Internet and my dance students for their help in doing the research! (What do the “stage” numbers indicate? What does mine mean for me? What are my options?) I felt rather like a humored school girl being given the choice of wearing one of two or three hideous dresses to the prom.

First, I had to decide whether to have my entire breast removed by mastectomy, have only the so-called “lump” of cancerous tissue removed (lumpectomy)–coupled with a long course of radiation therapy, or simply do nothing and hope that I would die of something else before breast cancer became loose in my blood system and took over my organs. The latter seemed the least likely choice to me. How about you? The terms of the statistics run in percentages of chances one might have of a cure. It was 50% for this, or 85% for that and a boost of another 5 or 10% for something else. How far was I willing/wanting to go? How much fear does it take to motivate you?

I found that even with the affected breast removed, there would still be a small percentage of possibility of re-occurrence. Removal of the entire breast, then, would not be a 100% cure!  Also, there was the question of the other breast… What were the statistics of cancer developing in that one too?

Absolutely, I felt alone, swimming in a sea of statistics, but dancers who had already had their own experiences with cancer, began to appear as angels out of the blue to help me learn and help me decide what to do. One of my current students was about to undergo a “lumpectomy” but she was still dancing, so bits of hope began to build.

“I see shell-shock in your eyes,” my surgeon observed. “It seems impossible to decide what to do,” I complained. “It all seems so much a game of chance; it’s betting, using your own life as the stakes.” She went over the statistics with me, and we decided together that the lumpectomy coupled with six weeks of daily radiation was my best combo of choice, leaving a full mastectomy and chemotherapy as a possibility if the lumpectomy proved insufficient. It sounded like the least ugly dress to wear to the prom!

My surgeon said that it was “fortunate” to have only a “Stage 0 DCIS” (a beginning ductile carcinoma in situ), so I would not have to undergo the usual chemotherapy, which was the part of cancer treatments that would cause one’s hair to fall out. “Oh, goody,” I thought. “At least, my hair will be okay.” (You find yourself unwittingly grasping for small bits of comfort in the news of the day.) Up ‘til then, I hadn’t even been aware that there were different kinds of breast cancer and that they were assessed in “stages” of development.

My dreaded surgery day arrived soon enough. My friend, Claire, drove me to the hospital before sunrise. First, I changed into hospital garb and the nurse wheeled me back to the radiology department where a doctor whom I had never seen before, would “insert guide wires” into my breast to guide my surgeon to the exact spot that was the site of my cancer-that-nobody-could-feel. He attempted to inject four huge syringes of pain-deadening medication, and most of it ran down my side and into the hospital flannels I was wearing.  It became a prolonged two-hour pain-filled ordeal with my sore breast squashed and trapped in the mammogram machine’s grip, due to the apparent ineptitude of this doctor as he repeatedly struggled to insert the wires correctly. He attempted to blame me for “moving”, but there could be next to no opportunity to move a breast that has been squash flat in a Mammogram device.

The hovering nurses were worried that I was on the verge of fainting, but I was too angry to faint.

One nurse held my hand and tried to assure me that he was an experienced doctor, but until this day, I wonder about his actual level of competency! I actually asked her if this was his first day in this department and if he was an intern. I was angry enough and aware enough to speak of him as if he were not present, mirroring the irritable way he was speaking about me and my hapless, pancaked breast.  I was fortunate enough to have my friend waiting for me back in my hospital room who demanded “real drugs” for me when she saw that most of my brave composure had dwindled. My face had paled to alabaster, and I told her what had transpired with the wire-guy. (Subsequently, I wrote a scathing letter to the hospital ombudsman and the radiology department.)

Nonetheless, the lumpectomy surgery after my “wiring” was a relative piece of cake. I went home the same day and began to heal. I was allowed a month to heal and believed naively that it wouldn’t be a long recovery and soon I would be able to get back to my dancing. Soon? …well, as soon as I got past the required daily trips back to the hospital for seven weeks of radiation treatments! Fortunately, my dance client who had undergone the same procedures just one month before me was able to give me helpful information and advice, and for that, I am so grateful to her!

However, nobody, not even my dance friend who experienced radiation treatment herself, could properly prepare me the mental impact that my radiation treatments would have on me. I became just a little crazy. Before radiation treatments could begin, to guide the radiation assistants, I had to have three tiny dots tattooed on my skin as I lay in a CT-scan machine in an icy-cold, dimly lit room. The procedure for a radiation session itself was an odd and bizarre experience; I became adversarial and planned on telling my radiation doctor to forget it, after approximately five weeks of trekking back and forth every weekday to be radiated, because I had had enough of it.  I was fed up and decided that I would not be coming to submit to any more of it.

radiation symbol
Each day of treatment (in the California summer heat) I went to a dressing area where I picked up a flannel hospital gown from a cabinet stacked with them, put it on, and waited for my name to be called (usually backwards) over a loud-speaker. For a couple of weeks, I brought my Middle Eastern music and earphones and tried to forget where I was, but the atmosphere was pervasive, and I felt that my music wasn’t helping me at all. Everything began to annoy me. People without hair, people groaning, people in wheel-chairs and gurneys came and went. The closet where the gowns were kept smelled to me like the sweetness of dead people. The gowns smelled peculiar too. When my backwards name was called, I was to trek down the hall in my flannel hospital gown to the intimidating radiation room where I recited my name in correct order and rattled off my birth date so the assistants were sure they had the right patient.

Bright yellow and black radiation warning signs were on the door. There were always two assistants and sometimes more; usually they were female, but sometimes male. I was to lie on a lumpy, narrow pneumatic table, with my bare breast exposed and both of my arms inserted in holders high overhead while the machine was strategically aimed, and then it radiated and buzzed for three minutes here and two minutes there and everyone (except me) ran out of the room to safety. The first three weeks were easy enough, but then, my breast became “sunburned” and rosy-red, peeling large pieces of burned flesh, and it became so tender that it was impossible to wear any thing but a cotton sports bra. Even the cotton hurt me.

The whole experience became worse and worse, the focus of my days and nights, until the sight of those male nurses and other radiation assistants coming at me set my teeth on edge, and I arrived at my very last nerve. I announced firmly that I would not be returning, and one of the assistants told me that the doctor would like to see me.

radiated patientHe said with a smile, “I am going to grant you a one-week ‘vacation’,  and then we can discuss finishing your course of treatments.” It was hard to return, but I was afraid not to go back for fear that if my cancer re-occurred, I would be excluded from any further treatment because of my bad (non-compliant) behavior. It was weeks before I could feel comfortable in a real bra again, but my stress level remained for many long weeks.

The worst aspect of radiation treatment for me was a side-effect that was fairly glossed over by the pink and blue pamphlets describing the wonders and ease of radiation treatment, and it did not seem to affect my dance student the same way it affected me. It is termed “radiation fatigue”, and, for me, it was formidable. I became too tired to dance, too tired to think, too tired to go shopping, too tired to stay awake for a movie, and too tired to chew food. It was a deep tiredness that seemed to feed on itself. The more I slept, the more sleep I demanded. Perhaps, I was a little depressed.

Gradually my radiation fatigue faded away after several months, leaving me apparently with a compromised immune system. I may never regain that resilient and energetic part of me that hops out of bed in the morning, ready to hum a tune, feed my cat, shower, and hit the dance floor. My dance life is more Taqasim w’Tarob (solo with deep emotion) than Entrance ala Nar (with fire) these days, but at least, I still have a dance life.

My words of wisdom for you concerning breast cancer is to be sure to schedule your mammogram each and every year. My cancer was found when it was still at “Stage 0” and could not be felt, even by an experienced surgeon.

Even after my DCIS had been surgically removed along with a chunk of breast tissue about the size of a ping pong ball, (providing for safety margins) and my breast had been subjected to weeks of radiation therapy, my oncologist still recommended to me (and expected) that I would start taking daily doses of a drug for a period of “only” five years. My oncologist and I were supposed to chose the specific drug from a long menu of drugs recently introduced. I did my research on each of the drugs that he recommended and discovered that formidable side-effect problems exist for all of them. These were not just casual side-effects, they were deal breakers for me. The choice eventually boiled down to choosing the cheapest, most long-used drug called “Tamoxifen” that eliminates estrogen from one’s body, thereby starving stray cancer cells that feed on estrogen and lurk in every woman’s body, all the time.  However, even with the promise of a 50% higher cure rate, this time, my roll of the dice told me, “No five years of swallowing more drugs, dealing with their side-effects, and no more cancer treatments of any kind for this battle-weary game-player!” To his credit, my oncologist listened and has respected my answering “no to drugs” (so far).

Now I wait, but as my mother (a pragmatic philosopher) advised me years ago: “Try not to worry about every little thing; chances are that you are going to die of something.”   To her words, I add my own: “…but not without a fight!”

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   |       |    5 Comments

  1. No Gravatar
    Shelley Muzzy

    Jul 30, 2011 - 07:07:22

    Najia….bravo!  Great article, as usual, but one that was especially poignant since I lost my daughter to breast cancer 6 years ago.  I know it sounds crazy, but I have been thinking about you this last year and wondering if you were okay…no special reason, just a suspicion.  We have had some nice exchanges through Gilded Serpent and I hold your acquaintance very dear.  You have my support in your journey…I am my own mother’s companion on her journey through cancer treatment right now.  These feelings are much too familiar.  However, you sound healthy and determined.  We all will die, indeed…you don’t get out of this life alive…but hopefully we will die of something else and die dancing!

  2. No Gravatar
    Sadira

    Aug 10, 2011 - 11:08:49

    Najia:
      Your openly candid experience with Breast Cancer, the procedures, the emotional dimensions are immensley read with gratitude.  I have had friends or relatives with Breast Cancer; who went through mastectomy’s and chemo; yet I never got such a vivid understanding of what the stages of intervention and treatment were like for them, as I did after reading your article
     How very true to your ethics in life; that you would print a vivid and memorable description of your experience.  I think I always have compassion and helped many with Cancer: but after reading your article it opened my eyes to the state of woman and their specific physical and emotional responses to this kind of cancer.  Yes, I saw the sunburned looking flesh on my neighbor’s chest and felt great empathy; but not the understanding that your words have given.
     As always I feel very proud to know you….because you are a woman who doesn’t allow situations to hold you silent in their grasp.  You educate women not only about the nuances of dance and that larger picture; but now about the only too truthful education about Cancer we face as women.  Breast Cancer is increasing in numbers and your article, though having me shake in anger and sadness all at the same time….reminds us as woman to not put our heads in the sand!
     Most important, my wonderful friend; by you completley telling your two stories of cancer…you have released them from holding you hostage with the cellular and emotional memories….you have liberated yourself from keeping that within…and then true healing on a deeper level takes place.
     Your being a dancer is forever….even if the choreography takes place on a different level, it is at the core of our being and passion and stays with us till the final breath on this journey called life.
      Thank you , Shukran Habibti

  3. No Gravatar
    faye

    Aug 22, 2011 - 04:08:05

    Thank you for your revealing, passionate and personal articles on Gilded Serpent.   You have indeed endured more than your share of strife.  I believe your articles will encourage others to be pro-active and cause an awareness of potential health challenges.  I admire your strength and determination.  faye

  4. No Gravatar
    zealousswindler67.soup.io

    May 12, 2014 - 11:05:48

    Superbe аrticle, persiste Ԁe cette façon

  5. No Gravatar
    Joellen

    Jun 24, 2014 - 10:06:20

    Magnifique article : encore une fois

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