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.

Nurses: Telling Our Stories Can Help Others

In art school, I once presented a painting entitled, “Recuerdo (I Remember)” for class critique. The painting was inspired by my experiences as a pediatric intensive care nurse.

The image sparked an enthusiastic discussion among fellow students, during which I answered many questions about the role of nurses. One classmate told the story of her baby’s stillbirth decades earlier. She thanked me for the sensitive rendition, allowing her to share her story.

The instructor said, “You’ve got something here.”

Recuerdo (I Remember) by jparadisi

Recuerdo (I Remember) by jparadisi

Recuerdo appeared in the college’s continuing education catalog the following spring. I was pleased with the painting’s reception, but I realize it could as easily have had the opposite effect: bringing a classmate to tears. Nurses’ stories are proverbial double-edged swords. When wielded thoughtfully, they heal. Even so, they can easily cut someone else to the bone.

I am aware of the power of story when practicing oncology nursing. I was occasionally a patient at the infusion clinic where I now work. My coworkers view the story I bring from the experience favorably. That I can teach tying scarves into attractive head coverings for chemo-induced alopecia is a plus. However, through trial and error, I have gained judiciousness about telling patients I am a cancer survivor.

Here are some self-imposed rules I follow about story telling in the patient care setting:

  • Know your patient’s prognosis. It’s one thing to tell a newly diagnosed stage 1 breast cancer patient that you are a survivor, and that her hair will grow back. It’s something else entirely to say the same thing to a woman with metastatic disease. Tailor the story to the patient’s needs.
  • Talk about cancer treatment in universal terms. Some cancers do not have the same level of news exposure and financial support as breast cancer. Cancer patients should not feel they have a less “special” kind of cancer.
  • If you are not ready to answer questions about your experience, don’t bring it up. It’s natural for patients in similar circumstances to ask what treatment options you chose. If we’re talking about breast cancer, they may ask if you had a mastectomy. If so, one or two? They may ask about sexuality, too. You might be judged for your answers. You have to stay therapeutic anyway.
  • Allow patients to have their own experiences. Cancer treatment is not one size fits all. Do not assume that a patient shares your concerns. Exchanging information is often best done through asking questions rather than offering opinions. Let the patient direct the conversation.
  • Know when to let go. Being a cancer survivor does not make me the world’s best oncology nurse. The experience is simply a tool at my disposal. What’s best for most patients is a team of expert, compassionate caregivers bringing their unique experiences to the conversation.

Have you had a health condition that impacts your approach to nursing — or a coworker who has? What advice would you share?