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.

Thank You, Even If It Might be Random

Argonauta: My Back to The Beach mixed media on paper by jparadisi

If the only prayer you ever say is “thank you,” that would suffice.

Meister Eckhart

Thank You.

My oncologist called yesterday afternoon with the test results: I do not have cancer. I do have gi-normus bilateral implant ruptures, which need surgery. David and I saw the MRI results at the oncology office. The ruptures are so huge that the woman who used the word “explode” was actually right. The oncologist validates that my symptoms could definitely be the result of a spontaneous rupture this big. I’m waiting for the scheduler from the plastic surgeon’s office to call.

David was out on a bike ride when the oncologist called. I emailed all my family and friends with the good news before he came home, so he was the last to know. The expressions that flashed across his face when I told him I had the results went from tension, to fear, to joy in the span of a moment. I didn’t cry then, but tears are in my eyes as I write this post. I could see how worried he was, and I felt bad about being the cause of his concern. A part of the worry about recurrence is fear of becoming a burden to this man I love so much. I’m not the only cancer survivor I know who asked herself before she married if it is a fair thing to do to to someone you love. I counsel others that “cancer people need love too,” but I know how they feel.

When I went through surgery and chemotherapy twelve years ago, I made two wishes. I wished to become an artist, and I wished to fall deeply in love and be loved deeply back.

David and I worked together as pharmacist and nurse for ten years before we dated. I didn’t know him personally until I was working light duty during my cancer recovery. During that time, we sat on committees together, and developed a friendship. He knew about my treatment, all my coworkers did. He saw me lose my hair, saw me bald, and saw my hair grow back. Somewhere through all of that, he fell in love with me. I didn’t realize it at first. I mean, we’d worked together for ten years. What kind of man falls in love with a bald, breastless nurse? A damn fine man. The best person I have ever met, and that’s saying a lot, because I know lots of really good people.

We started dating a year after my recovery, and married three years later.

Two weeks ago, while we sat in the waiting room before my MRI, I took off my wedding ring for David to hold while I had the test. Out of his jacket pocket, he pulled the original cardboard box that held the small, velvet jewelry box our wedding rings came in. His ring was already inside the box. “They need to stay together,” he told me. If the tech hadn’t come to get me that moment, I would have cried. In fact, I did cry a little on the MRI table thinking about how good my life is, and how much would be lost if the cancer had recurred.
Thank You.
I don’t know why I am a lucky one. I’ve stopped wondering why I’ve been blessed with such a positive outcome when so many others are not. I am no more special than any of my patients or friends who have succumbed. Most of the time it feels like a poker game and all any of us can do is pick up the cards we are dealt. Maybe it is that random, I don’t know. But if it’s not, Thank You.

When Looking for Kittens, Beware of Snakes in The Grass

And He who made kittens put snakes in the grass.

-Bungle in The Jungle, Jethro Tull, lyrics by Ian Anderson

Grass photo: jparadisi

Dammit, I almost passed “Go” with a “Get Out of Jail Free” card. Leave it to a competent surgeon to say, “Hold on thar pardner, not so fast…”

I had a surgical consult last week. Yes, she’ll replace the implants, but first she wants to make sure I have a clean bill of health. There are more tests needed before I have this procedure. So off I go to the oncologist’s office.
I have a good medical team. All the same, I can’t stand being a patient. First, there’s all this “hurry up and wait.” If you are a hospital nurse and never had a chronic or life changing health problem managed in an outpatient setting, you have no idea how slowly that system works. You think things are slow inside the hospital, but tests, labs, and consults happen at lightning fast speed in a hospital compared to the ambulatory setting. Calling your physician’s office and “nudging” things along like you do for your patients annoys the office staff. If you talk to them the way nurses talk to each other and to ancillary staff, you will alienate the people you need for help. I have no idea how people manage it without a medical background. In my opinion, if the physician’s staff is regularly disorganized or difficult, I shop elsewhere. The best doctor in the world can’t help you if he or she is unreachable through their office.
Another thing: I’m a pretty good nurse, but I don’t know much about breast implant replacement. The last thing I want is an unnecessary surgery. Despite the MRI results indicating bilateral ruptures, my surgeon says ruptures are unlikely. She says there may be leakage through the scar capsule. She won’t know until she cuts. The terminology is confusing. This FDA website uses the terms rupture and leakage interchangeably. Many breast cancer websites provide information about breast reconstruction after mastectomy, but nothing about what happens years later.

Years later“…brings back to mind the bigger issue: All of this dredges up the memories, concerns, and fears from my first diagnosis. I know it’s smart to get the medical work up, but when you go looking in the grass, you don’t know if you’re going to find kittens or snakes. When I received the “all clear” to leave Cancer Land, I ran fast and didn’t look back. Like many cancer survivors, I left on a visa, and my green card can get pulled at any moment. I don’t think it will, but that’s believism. The only way of knowing is to run the tests. If my intuition is correct, the results will be negative. I will still need the procedure, but that’s a kitten compared to the snake of cancer.

This blog describes my personal experiences and is not medical advice. If you have similar symptoms, questions or concerns, consult your licensed medical provider.

It May Help Someone

US West Communications photo: jparadisi

I apologize to my friends and family members who are reading about my current health issue for the first time on this blog. Finding out about what’s happening in the lives of the people you love through social media is akin to a HIPPA violation, but there you have it. It’s not that I don’t care, or don’t miss communicating with you directly, it’s that when an unexpected health problem occurs, hours of time are spent on the phone navigating the system for appointments, waiting for return calls, requesting diagnostic information, notifying work, canceling or rescheduling activities previously planned, and fulfilling as many other commitments as possible before surgery. I did call my mother first, because Mom finding this stuff out on the blog is a HIPPA violation where I come from. At times, I wonder if I should blog about this at all, but from the beginning I’ve felt that these posts may help someone.

One of the phone calls I made led to a strange encounter. I was prepared for most of the questions the woman asked, but a few seemed odd. For instance, when she found out that my implants have ruptured, she asked if it’s a common occurrence. I wasn’t sure what she meant. Common for me? Common for breast cancer survivors, or for implants in general? I told her implants have an expected lifespan of ten years, but I don’t have actual statistical data. She asked if it hurts. No, not now, just uncomfortable. There was a pause on her end of the line, then she asked the most outrageous question: “Is there a nicer word to use than ‘explode’?” Offended by her insensitivity, I sharpened a smart-ass remark and aimed it at her carotid. Then I thought better of it. In my best teaching voice, I said, “Use the word ‘rupture’; if you say ‘explode’ to a breast cancer survivor, you might make her cry.”

I was unprepared for the woman’s response: “I know, I’m going through it myself.” Incredulous, I asked her, “You have breast cancer?” She said, “Yes.” She told me she finished chemo and is going through reconstruction.

I dismounted my moral high horse. I considered the anxiety my story would have triggered in me when I was going through reconstruction, or cause someone else who is experiencing it now. She has a difficult job.

With genuine concern, I told her I am sorry she had breast cancer too. I told her that despite my current predicament, I am glad I chose reconstruction. I told her that being alive makes this problem entirely worth it.

And I mean it.