Alopecia and the Pirate

Note:  In honor of International Talk Like a Pirate Day, I have republished this post. 

As I write this post, some scientists are searching for ways to prevent male baldness through genetic manipulation. Others are conducting similar research to cure cancer. Is hair really as significant a part of our identity as we are sold to believe?

My hair began falling out the 14th day after the first chemotherapy infusion. In preparation, I bought a wig, styled and colored the same as my real hair. Like a feral animal, it perched on its stand, awaiting an opportunity.

When I saw the first ungodly huge handful of fallen hair I was too stunned to cry. Instead, I mumbled, “F***,” repeatedly, like a demented chicken.

It didn’t fall out all at once. Each morning for a week, I’d step out of the shower holding gobs of hair in my hands to prevent clogging the drain. After blow-drying what was left on my head, I’d take a pair of manicure scissors, like a naughty three-year-old, and try to even it out and disguise the bald patches. When I no longer could, a coworker’s husband shaved my head while she collected the locks, tying them into small bundles with blue satin ribbons.

After a time, I stopped wearing the wig. I preferred to cover my baldness with a red bandana, pirate style. Image

It was summertime, and I was at downtown Portland’s Pioneer Square, when a young man wearing a pirate’s black hat, white blouse with buckskin laces, black britches, and boots approached me. He clutched an authentic-looking sword. This was years before Johnny Depp made pirates sexy. Despite fatigue and chemo brain, I understood:

“Oh, no, this guy sees my bandana. Pirate guy thinks he’s found pirate girl.”

There was no place to run.

He spoke to me. “Ahoy! Me beauty, how art thee this fine afternoon?”

“I art fine, thanks,” I replied. “Why are you dressed like a pirate? Is that sword real?”

“Aye.”

He belonged to a club, of sorts, of people in Portland who dress like pirates and act out sword fights. I puzzled over what he wanted until he reached into his blouse and pulled up a goddess pendant dangling from a leather thong around his neck. He brought the goddess to his lips, kissed it, and then pointed to the carved turquoise goddess I had worn on a silver chain since my diagnosis.

“My fair Muse hails from Hungary, where she symbolized the female spirit of war and led her people to victory. I see you wear the Goddess yourself.”

Doffing his hat, he bowed before swaggering back into the crowd.

He had approached because of the necklace, not the bandana. He hadn’t noticed that I was bald — or had he? Did I just have an encounter with an eccentric or a very kind man dressed as a pirate offering encouragement?

He left me smiling. There is more to each of us than what we look like.

This post was originally published by TheONC.

Alopecia And The Pirate

As I write this post, some scientists are searching for ways to prevent male baldness through genetic manipulation. Others are conducting similar research to cure cancer. Is hair really as significant a part of our identity as we are sold to believe?

My hair began falling out the 14th day after the first chemotherapy infusion. In preparation, I bought a wig, styled and colored the same as my real hair. Like a feral animal, it perched on its stand, awaiting an opportunity.

When I saw the first ungodly huge handful of fallen hair I was too stunned to cry. Instead, I mumbled, “F***,” repeatedly, like a demented chicken.

It didn’t fall out all at once. Each morning for a week, I’d step out of the shower holding gobs of hair in my hands to prevent clogging the drain. After blow-drying what was left on my head, I’d take a pair of manicure scissors, like a naughty three-year-old, and try to even it out and disguise the bald patches. When I no longer could, a coworker’s husband shaved my head while she collected the locks, tying them into small bundles with blue satin ribbons. Image

After a time, I stopped wearing the wig. I preferred to cover my baldness with a red bandana, pirate style.

It was summertime, and I was at downtown Portland’s Pioneer Square, when a young man wearing a pirate’s black hat, white blouse with buckskin laces, black britches, and boots approached me. He clutched an authentic-looking sword. This was years before Johnny Depp made pirates sexy. Despite fatigue and chemo brain, I understood: “Oh, no, this guy sees my bandana. Pirate guy thinks he’s found pirate girl.” There was no place to run.

He spoke to me. “Ahoy! Me beauty, how art thee this fine afternoon?”

“I art fine, thanks,” I replied. “Why are you dressed like a pirate? Is that sword real?”

“Aye.”

He belonged to a club, of sorts, of people who dress like pirates and act out sword fights. I puzzled over what he wanted until he reached into his blouse and pulled up a goddess pendant dangling from a leather thong around his neck. He brought the goddess to his lips, kissed it, and then pointed to the carved turquoise goddess I had worn on a silver chain since my diagnosis.

“My fair Muse hails from Hungary, where she symbolized the female spirit of war and led her people to victory. I see you wear the Goddess yourself.” Doffing his hat, he bowed before swaggering back into the crowd.

He had approached because of the necklace, not the bandana. He hadn’t noticed that I was bald — or had he? Did I just have an encounter with an eccentric or a very kind man dressed as a pirate offering encouragement?

He left me smiling. There is more to each of us than what we look like.

This post was originally published by TheONC.

I Am Living As Free As My Hair

Someone asked if I color my hair. I said, “No I don’t, I pay someone else to do it.”

Once my hair grew back after chemotherapy my attitude toward it was changed. Before treatment for breast cancer, the color, length, and style of my hair was linked to my identity. Enough people share this link with their hair that “having a bad hair day” is common parlance. When it fell out (alopecia) in fistfuls as I shampooed in the shower, fourteen days after my first chemo treatment, I cried, “Fuck, fuck, fuck,” like a demented chicken, even though I knew it would happen.

Nowadays, I experience my hair as an accessory; its color and length mercurially changes, like a hat, within the boundaries of our hospital’s dress code, which outlaws hair colors not found in nature. Contrary to Lady Gaga’s song As Free as My Hair, a nurse’s hair lacks total freedom. Here’s an example: a classmate in nursing school came to clinical rotation one morning with a new, short haircut. Her abundant, thick hair was spiked in a then-new punk hairstyle. It was cool, and I admired her for doing it. The school’s dress code demanded that hair be kept above the collar of a student nurse’s uniform at all times, but didn’t specify anything about how short it could be. Our clinical instructor became unglued over the unprecedented hairstyle, calling out the student in front of the class, and telling her she looked like she’d “combed her hair standing in front of a fan this morning,” before making her flatten down the spikes with a comb. Without a doubt, the hair of a nurse lacks freedom.

Anyway, the other day I was sitting in a salon, my hair wet and matted with a new color. It’s fall, and time to color over summer’s golden highlights with chocolaty, cherry red. It’s beautiful, and popular in the fashion magazines I thumbed through while the color set. Sorry, I don’t carry nursing journals with me to read during spare moments. At the salon, I read brain candy. It’s fun, which is good for my soul.

At the sink across from me, a young woman had her hair washed by a stylist, and was telling the stylist that she enrolled in nursing prerequisite courses this fall and hopes to get accepted into a nursing program next year. Nursing will be her second career: she is a recently laid off teacher. I’m not sure why it struck me as odd that a teacher would decide to become a nurse, because I know nurses who became teachers. I wonder if she has a better chance of finding a nursing job than a new teaching position without moving? Through social media, I hear finding a nursing job as a new grad or a returning nurse is pretty tough everywhere, not only in Portland. Does she know that many nursing departments are laying off through attrition, if not by actual termination? Who is telling these students that nursing will solve unemployment woes? In today’s economy, nursing job security is not what it was only a few years ago.

I also wondered how nursing and teaching compare as careers, so I searched the Internet to find out. The best information I found comes from blog posts and comments on the subject. AllNurses.com (Nursing versus Teaching Major, Feb 1, 2010) and College Confidential (Teaching Versus Nursing, April 26, 2010) had the most compelling conversations, in my opinion. In summary, both careers are described as challenging, overworked, and highly respected. As in other industries, neither guarantees job security in the present economic crisis.

Losing your hair, or losing your job alters your identity.

Inside the salon a woman gets a new haircut, and in time, perhaps a new career.

After a rinse and blowout, I left the salon with a glossy new hair color, still a nurse. I am living just as free as my hair.

The Joy of Chemo Brain

Untitled charcoal on paper by jparadisi

Recently, I spent time exchanging cancer stories with patients, which is one of my favorite things to do. Although I’m an oncology nurse and a cancer survivor, I don’t get to do this as much as you might think, because patients come to the clinic for medical care, not hear me confuse my personal cancer experience with theirs. However, when asked:

▪  Does it feel weird when hair falls out?

▪   Is chemo brain is real?

▪   Should I buy a wig?

I volunteer my experiences, which are:

▪  Not everyone feels his or her hair falling out. I did, and it felt like I had my hair pulled back for hours in a too tight ponytail.

▪  Chemo brain is real. I experienced it as living submerged, just below the surface of normal clarity. I could not do even simple math equations to save my life. Often I couldn’t remember certain words or the names of coworkers unless I saw them daily. It felt as though my brain flipped through an internal “Rolodex” searching for the information, similar to the sensation felt when a word is “on the tip of the tongue.” I hit an all time low while watching a sitcom with my family. The laugh track sounded. They laughed, and I couldn’t understand the joke. I was sure I’d lost my mind.

▪  Maybe. I stopped wearing my wig soon after the shock of alopecia wore off. I had a habit of resting my fingertips on my temples, under the wig, and wiggling it. I did this in a restaurant at dinner with my sister. She told me to stop it. I realized I didn’t need the wig. It remained perched on its stand on my dresser like a small furry animal for the rest of my treatment. They are a good idea if you want to keep your cancer experience private.

Talking about my cancer experience reminded me someone had told me someday I’d miss it. Crazy as it is, she was right. Cancer brings some gifts. The best one was the opportunity to slow down my life and readjust its priorities to promote joy. I learned that there is no such thing as a balanced life. Life is a juggling act. The trick is in knowing which balls in the air make you happy, and which ones make you frantic. I enjoy juggling many balls in the air at once, but only if I feel a deep connection to each one. I choose every ball carefully.