Breast Investigators

As an Alopecian, the hardest part of hair loss for me is that I am assumed to be sick, or more specifically, to have cancer.  Not only don’t I have cancer, but beyond my immune system’s assault on my hair follicles, I am absolutely healthy.  Bummer?  Yes, but life goes on and I choose to move on with it.

A couple of years ago, I conducted a two-part survey exploring the emotional impacts of hair loss.  In addition to an Alopecia Survey, I conducted a separate Cancer Hair Loss Survey.  A whopping 461 women have taken the survey and there is much to be learned from them.  I learned that while the cause of our hair loss is different, we largely agree on the most difficult aspect of hair loss - the public perception that we are sick.  Yes, a cancer patient is fighting a disease, but it’s a disease that is otherwise invisible to anyone not peering at us with the aide of an MRI or CT scan.  Cancer patients desperately want to carry on with life as normal.  Hair loss strips women who are undergoing chemotherapy of their anonymity.  It’s like carrying a neon sign that flashes “I have cancer.”

When I look in the mirror, I am reminded that I have alopecia areata, a disease that causes me to lose my hair but does not threaten my life.  When a woman with chemo hair loss looks in the mirror, she’s reminded that she’s fighting for her life!  When others look at her with fear, pity, questions or comments regarding her status as a cancer patient, she’s reminded that she’s fighting for her life!  She doesn’t want reminders.  She wants to stop cancer from defining her, her life, and her family’s life.  Hair loss can get in the way of that, but it doesn’t have to.

Just because we are bald, we don’t have to look sick.  The trick is to redirect the eyes and attention from what we’re lacking to all that we have!!!  Colors, patterns, texture, eye-catching earrings, facial definition with make-up, fun fashion, a fit body, or a vibrant smile all show that we are and always will be more than our hair, more than a disease.

What strategies have you developed for redirecting their eyes from what you’re missing to what you’ve added?

Susan Beausang, 4women.com

As we sweep away the final remnants of pink that have come to symbolize October, I realize that I am 3 years past my chemo treatment that started October 16, 2008.  I'm still here - that makes me a "survivor" - but what does that mean?

I don’t know why some of us survive and others do not, no matter how fiercely they may fight. There are those that face devastating battles, which leaves me feeling I am in no position to complain. My case was merely a case of sniffles in comparison.

To be a cancer survivor means I have been blessed with another day.  It doesn’t mean I’m safer than anyone else.  It doesn’t mean the risk is over.  It doesn’t mean another cancer can’t attack at any moment. 

I am angry that I “did everything right” and got cancer anyways, but that doesn’t minimize my appreciation of the endless miracles in my life. 

Being a survivor does mean I have a greater respect for life. I was given a second chance, and I am grateful for that with every breath. And I educate – even nag – others to trust their body, recognize when something is not quite right, don’t delay testing and get screened regularly because we don’t really know who is at risk or why.

There is a lovely line from a short prayer that asks, “May the stream of my life flow into the river of eternal love.”  I don't remember where I first found it, but it touched me so deeply that it forever surpassed the multitude of prayers I was forced to memorize in school.
 
It reminds me that moments of our life are like the infinite droplets in a stream, mostly unnoticed as they rush toward the river of experience that is our life. But every now and then we are splashed with a moment that becomes an indelible memory, part of the story that ultimately defines us.

When cancer flooded my life, it was not without significant splashing moments.

The moment in 2005 when I found “a lump.” The tiny, hard kind you read about in all the “how to do a breast self exam” flyers. 

The kind you hope you’ll never find.

The moment when realized I was not separate from the women around me, uniformed in our blue exam gowns as we sat in the radiology waiting room, trying to pretend it was just a routine office visit. United by the fear that our bodies may have turned against us, we waited.

I wondered which of us would remember that day as “The Day I Found Out…”

The moment when my tests came back clear – when they said it was simply scar tissue.

I felt released, relieved and invincible.

And three years later, after a routine mammogram, when the nurse brought me to a consult room, where I waited in the eerie glow of light boxes and diagnostic equipment. 

The doctor entered with a warm smile, sleek black hair, and looked much too young to be giving me advice. He said it still looked like scar tissue, but had changed a little and I might want to consider a biopsy. 

I was afraid a needle biopsy would hurt and I wanted to stop worrying about the lump. Put me to sleep, take out the whole damn thing.  Let’s be done with it.

I remember a groggy post-op grin to my smiling surgeon who said everything went great, see you in 2 weeks.  At the follow up appointment I actually asked him to cut to the chase because I was late for work.  Exam, smiles, it was healing beautifully.  Yeah, yeah, let me out of here.

No one suspected cancer, none of the tests hinted at malignancy.  I had no family history of breast cancer. My family’s life expectancy is 100.  I had a healthy lifestyle and a positive attitude. 

No cancer for me.  Can I go now?

He looked down at my file.  “Well, it’s cancer.”

The stream of my life roared over me like a tsunami.  He patiently delivered his speech on the early diagnosis, favorable prognosis and treatment options. 

All that tumbled around my mind was, “blah blah blah it’s cancer am I going to die? Will I lose my hair? Who will see my patients? How will I pay my overhead?"

I remember the look on my husband’s face that night when I told him, his silence through my chattering about the "early diagnosis and good prognosis."

I had to keep talking to break through that “blah blah blah it’s cancer are you going to die?"  I wanted to protect him and everyone I loved from any pain or fear. 

To hear the words, “It’s breast cancer” (or any other life-threatening diagnosis) transforms your life. Until that moment, there is no way to even guess how you would respond.

You only know will have no choice but to pack for your journey into the unknown, armed with love and support.  And be confident that your guides will appear with the answers whenever you have a need.

Life through breast cancer was surreal.  Every day presented a new challenge as my body shed one thing or another or erupted with an unexpected symptom.

Yet I’d look up and appreciate the sky, with gratitude for the day. I’d more deeply love the people around me. It was painfully clear that I darn well better, because none of us know how long we have to enjoy this life. 

I discovered solace in my garden, and metaphorical wisdom in killing off the weeds and replanting new life.  I found hope in watching the cycle of death and renewal.

The health field is my life work, and I thought my vision was expansive. Breast cancer was a humbling event; I realized how little I knew, even about my own body.

Suddenly there were floodlights that brought a depth of knowledge, compassion and empathy that would never have been so amplified had I not been faced with this detour in my life.

I've often been told not to get too stuck in my head with all the intellectual stuff – and to deepen the connection between my heart and intuition.

There was probably a simpler way to work that out besides getting cancer, but here I am.  I feel blessed that I was guided to remarkable teams of doctors and nurses. And the angels in human and other forms that inspired me to find solutions along the way.

Cancer taught me that I am vulnerable, mortal, and no one is invincible. If I had the choice of never having had cancer or having it, I would accept it, although I truly hope my lesson was learned and I don’t have to repeat it.

The benefit I could never have foreseen is that cancer connected me as lifetime member of what I call the Reluctant Sisterhood. Absorbed into a network of survivors that inspired me to believe this could bring me greater strength, we pool our hard earned wisdom to share with those who will unfortunately but inevitably follow. 

We probably would not have chosen this path. Yet we are eagerly drawn into this collective conscious and unconscious network of healing.  This is not limited to breast cancer, nor to women; anyone with a need to heal is embraced into the circle of those who have traveled it ahead of you. 

This journey has been remarkable, and even the pain and nausea and frustration pulsated with the adventure of life itself that makes me more grateful for every day. 

I have an extraordinary husband and family. I learned over and over how incredible my friends are, and every day was like falling in love all over again.

They will be there with unfaltering support through any perilous journey, surrounding me with the love, prayers, sparkly vibes, decorated heads, cards, emails, and most of all the laughter and heartfelt warmth that makes it so easy for me to keep a positive attitude.

I feel gratitude every moment for how they enriched my life beyond my imagination.

I used to believe, "Everything happens for a reason." Then I got cancer, and entered a family of thousands of cancer patients of all ages. And I can find no reason for all this suffering.

Now I believe stuff happens for no reason. But what I do believe is that what we do with that "stuff" defines who we are. I believe we are incredibly loving beings, with instincts not only to preserve our own survival, but to ease the suffering of others.

Whether you knit a cap, send a card, call, tweet or discover a cure, your role in another’s healing is equally important. Our strengths arise from our ability to sense the needs of others and our resiliency in the face of adversity to find solutions that will ease their pain.

I’d like to share the rest of that short prayer, or maybe it’s a poem or a wish.

God made the rivers to flow.

They feel no weariness, they cease not from flowing;
they move as swiftly as the birds in the air.

May the stream of my life flow into the river of eternal love.

Loosen the bonds of sin that bind me.

Let not my work be ended before its fulfillment.
and let not the thread of my song be cut while I sing.
(Rig Veda)

When we lose our hair, be it due to chemotherapy, Alopecia areata, or other causes, we feel as if we are entirely alone, the first and last to be truly shocked and devastated by our hair loss.  Our mind may know better, but in our heart, we feel alone.  I try to remind women they are not alone.  There are many of us who understand exactly what you are going through.  Following is a video posted by a woman in the midst of her hair loss due to chemotherapy.  She provides practical tips for taking some control of the situation and even having a little fun with it.  I hope you find it helpful.  Just click on the picture to go to the video.

Who doesn’t love free stuff?  Free drinks, buy-one-get-one-free, free flights, free advice, and my personal favorite - FREE WIGS - worn by who knows who, for who knows how long, and under who knows what circumstances.  I collect them and they make me feel so much better about being bald.

Fooled ya.  I like the idea of putting a pre-owned, pre-worn, donated wig on my bare head about as much as I like the idea of wearing pre-worn socks or underwear.  Wigs are hard enough to embrace, false and foreign as they are, but just imagine the wig of unknown origins and owners.  Would wearing such a wig help you to feel better about losing your hair to chemotherapy?  Or might it make you feel worse?  With cancer robbing of us of so much, I think maintaining our dignity matters to our quality of life.  Don’t you?

I can only speak for myself.  I wouldn’t for even a split of a split-second judge anyone for embracing one of those generously donated wigs offered to you at your cancer care center as a better-than-nothing option.  Call me biased but I am of the very strong opinion that women who lose their hair during chemotherapy both want and deserve something better than the better-than-nothing option.  Free stuff is great when we’re talking yard deco, plant pots, and car racks care of craig’s list, not so great when we’re talking about head coverings for sick and emotionally devastated bald women.

If you think I’m making the obvious of obvious points here, I wish you were right.  I cannot tell you the number of oncology office and cancer treatment center staff that have told me they’re not in need of information about head coverings for their female patients because they have a box of donated wigs on hand for distribution.  I am so glad that someone is going to the trouble to make free wigs available to women facing chemo-induced hair loss.  Someone somewhere will truly appreciate such an option.  As for the rest, they need options too.

Susan Beausang, 4Women.com

A fashion solution for a bad hair day or hair loss are colorful head wraps, turbans and layered scarves, which can be worn indoors or out, from casual to formal looks.

If you think you don’t look good in the latest head wraps or turbans, maybe you haven’t found the right style for your face shape.  Just like choosing a hairstyle, your goal is to accentuate the positive and balance the shape of your face.

Remember this is an accessory - so coordinate your colors.  Spend a couple minutes on your makeup & the process can really brighten your day, even when you feel lousy.

What is Your Face Shape?

A quick trick is to stand in front of a mirror, smooth your hair away from your face and draw an outline of your reflection on the mirror with a soft eyeliner pencil or old lipstick. 1. Notice the overall length and width of your face. 2. Compare the width of your face in three places:

• Across your forehead just above your eyebrows
• Across the top of your cheekbones
• Across your jaw line and chin

An oval face is about 1-1/2 times longer than it is wide and the most balanced shape. Whether or not you have hair loss, you can wear just about any style of head covering. If the length and width of your face are fairly equal, you have a round face and will want to embellish the flat outline of the basic turban or head wrap. Add height by layering with a twisted band or scarf. You can further soften lines with a bow, half bow or silk flower on one side just above your ear. A square face is about the same width across the forehead and the jaw line. Add height with a twisted band as described above. To soften your jaw line, tie the band just behind your ear, with full ends flowing in front of your collarbone. Or tie a large bow above or behind your ear. A heart-shaped  face is widest across the forehead and/or cheekbones, with a small, narrow jaw line or chin. The edge of the wrap can be a little lower on your forehead, with the knot behind your ear and the tie ends hanging long in front or back. For you, scarf ends that are square or rounded will look better than pointed ones, which can exaggerate a pronounced chin. A full bow towards the top of your head will accentuate your eyes.



For all face shapes, first bring the edges of the piece around your natural hair line to cover the tops of your ears, and play with twisting, wrapping and tying the end in knots, bows or half bows (only one loop).

If the turban completely covers or replaces your hair, you can balance the look even more with earrings that are larger than you may normally wear.  Experiment with tying the knot on one side and then the other, with tail ends hanging down. Spread the fabric of the bow for maximum fullness, and position it in different areas around your head.

With the increasing number of women every year that undergo chemotherapy, almost everyone has someone close that has to deal with the side effect of complete hair loss, known as alopecia. As our population ages, many women experience thinning hair from thyroid problems and other medical conditions.

In normal circumstances, simply having a bad hair day is aggravating, but hair loss compounds the devastating effects of greater health challenges.

It is not shallow vanity to want to improve our appearance. As visual creatures, we instinctively want to decorate ourselves to relate to others and display our need for connection. Even through illness, you will be more encouraged be around people if you know your unique beauty still reflects from the inside out. Being around those who love and support you is one of the best natural medicines you can find.

How do you "fluff up" to feel better?

Among the small sample of artwork I own, my favorite pieces are 4 oil paintings created by an artist in Mangochi, Malawi. One of the things I love most about these four paintings is that each one is limited to about 4 shades of one color, with only the addition of black for shadow and depth. Until I find the perfect frames to do my paintings justice, they’re stored carefully out-of-view because all fine art deserves a fine frame.

Our faces are no different.   A face is the canvas that expresses the soul.  We look to each other’s eyes, mouths, or chin angle for a sense of the underlying emotional being.  Without hair, our faces can appear stark and in need of a frame.  Fortunately, hair is not the only thing that can frame our faces.

Hair accessories are not just for those with tons of hair.  From wide head bands such as 4Women.com’s transitional head scarves, to full-head fashionable scarves like the beaubeau, to fun, elegant, or fashion-forward hats, head coverings can frame the face, complement your outfit, and make a personal fashion statement.

With or without hair, you can also frame your face with sparkle and color.  I don’t know about you, but I so love earrings.  I love it when others wear earrings because I love watching how the light reflects off of different materials and colors.  Just yesterday, Brooke (my beloved 4Women.com colleague) wore a pair of fabulous black earrings that would catch the light from different angles, adding just a touch of deep sparkle along the sides of her face.  Necklaces do the same, framing the chin and smile, bringing color out of our eyes, clothes, or head scarves.

Whether framing a painting or a face, frames come in all styles, shapes, colors and sizes.  If you’re losing or have lost your hair and feel as if you’ve lost your expression, identity, or your artistic canvas all-together, think again.  Think accessories.  Color, texture, sparkle, movement - all elements that will frame your finest piece of art, your face.

Have a favorite neck-up accessory for framing your face?  We’d love to see!

Michelle, 4Women.com

June 21st, 2011

We women  are taught to crave beauty from a very early age.  I still have my childhood doll  - a perfect china-faced beauty with rich blond curly hair, long lovely lashes,  luscious red lips, manicured nails, and a flawless body.  I grew up in the Marilyn Monroe era.  Then, as now, actresses were icons of style, elegance and beauty and would never allow themselves to be seen in public in anything but pure glamor.  In addition, 1950’s Mom’s (like my mother) had no shortages of images of women doing housework or cooking duties with beautiful dresses covered in spotless aprons and perfectly coiffed hair.   The importance of beauty is ingrained - reinforced repeatedly, even more so in a society where it’s impossible to escape visual images.  They are everywhere.

With all this emphasis on “looking nice,” what can a person do when they don’t feel beautiful?  What does a person do when the image staring back at them in the mirror has had an appearance alteration (such as me with hair loss), which is  not reflected by any of the bazillion faces on magazines, TV, Internet, social media - you name it.  Aha - look within?

Yes, my hair loss has forced me to reassess my preconceived notions of what defines beauty.  Alopecia has helped me realize that when it comes down to it, the only person I really need to satisfy is myself.   Easy?  NO.  Feeling beautiful when you don’t feel beautiful is no easy task.  Believing people when they tell you that “you look beautiful” is a learned behavior.  So exactly what are people trying to tell me?  I’m gradually realizing that the words can encompass much more than physical appearance.

“Beauty” can and should include being a good friend, wife, daughter, mother, grandmother.  Looking beautiful can refer to your moral character, your personality, your smile, your sense of humor, your caring way, your ability to make someone else feel good,  your generosity  - your inner self.  Yes, I may be bald on top but I am NOT bald on the inside.  When someone tells me I look beautiful, I will try hard not to analyze what part of my physical appearance they are referring to and believe they are seeing me as a whole person.

Susan Beausang, 4Women.com

They call it our “crowning glory.” Our hair is the crowning element of our identity - from our femininity, to age, confidence, and style, we communicate a great deal about ourselves by how we wear and style our hair.  Without hair, we feel stripped of our identity, and in the context of cancer, it often feels like we are systematically being stripped of ourselves.  Hair loss can feel like the last straw.  Too many of us feel guilty for caring about our hair when faced with a life-threatening disease like cancer.  I believe we have every right to want to feel good about ourselves, especially when fighting cancer.

Hair loss can be one of the most difficult and feared side effects of chemo.  When a woman finds out she needs chemo, she will often immediately begin anticipating hair loss, its impact on herself and her loved one’s.  Just as with other unwanted events in life, we tend to envision worst-case scenarios in anticipation of our hair loss, possibly making the anticipation more difficult than the hair loss itself.  Feeling helpless in anticipation of a negative or unwanted event may cause feelings of reluctance, fear, and depression.  Just as anticipation of a hurricane or tornado stirs us to take action to protect ourselves from the worst forces of the storm, so can anticipation of a major appearance change such as chemo-induced hair loss stir us to take actions that help us rise above the emotional storm.  A greater sense of control over a changing appearance can ease feelings of fear and depression and motivate us to take control of other aspects of our lives that contribute to a greater quality of life during cancer treatment.

Following are some tips for turning your anticipatory hair loss anxiety into actions that will reduce your anxiety, improve your self-esteem, and increase your sense of control over your appearance. These tips come from anonymous respondents to 4Women.com’s Anticipatory Coping survey, women who have faced what you are facing and picked up helpful coping mechanisms along the way.

1) Watching your hair fall out can be very traumatic.  Cutting your hair short or shaving it can help you feel more in control and avoid difficult emotions triggered by sudden hair loss.

2) Be prepared!  Don’t wait until your hair is gone to figure out what you need.  Have a small sample assortment of head wear options on hand before hair loss occurs.  Once you’ve determined your preferences, you can always purchase multiples of particular items.

3) Chemo-induced hair loss is almost always temporary.  Keep this in mind when choosing a wig that best suits your needs.  Talk to other women who have purchased and worn wigs and research reputable wig salons.  Many women feel more secure having a good wig on hand for public outings.  Match a wig with your own hair color or experiment with a new color and style.

4) Comfort is key.  Tight hats, scarves, or wigs will cause headaches.  Head wear that is not sufficiently snug will have you feeling insecure, wondering if it will stay in place.  When choosing scarves, look for pre-fitted and pre-tied styles so that you don’t need to worry about raising or holding your arms over your head to style, tie or adjust your scarf.

5) Color me happy!  Colors that looked good on you prior to hair loss will still look good on you.  Brighter and bolder colors can help brighten your self-image when you are feeling pale or tired.

6) Accessorize your look from the neck up - be bold and creative.  Whether you’re wearing wigs, hats, scarves, or going bald, accessories like earrings or a necklace can add shine, sparkle, or definition to your face.

7) Keep your noggin warm!  Without hair, you may find you’re more prone to get cold, especially at night.  Soft, comfortable sleep caps can keep you snug and warm during your hair loss nights.

Check out our article, “Anticipatory Coping: Taking Control of Hair Loss,” which appears in the June issue of the Clinical Journal of Oncology Nursing, in which we advocate for more efforts to proactively prepare women for hair loss from oncology nurses.

Susan Beausang, 4Women.com