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.

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.

When a Young Person Dies for No Reason

Persephone (oil on unstretched canvas) by jparadisi

“You expected to be sad in the fall. Part of you died each year when the leaves fell from the trees and their branches were bare against the wind and the cold, wintery light. But you knew there would always be the spring, as you knew the river would flow again after it was frozen. When the cold rains kept on and killed the spring, it was as though a young person died for no reason.”
-Ernest Hemingway

Ernest Hemingway, you are wrong, poetic, but wrong all the same. I’ve bitched a lot recently about the cold rains killing the spring here in Oregon. It sucks, but in no way compares to the death of a young person. I left pediatric intensive care for oncology nursing almost ten years ago, after treatment for cancer. The outpatient oncology unit’s hours accommodate my art and writing careers while my experience as a patient adds an extra dimension to my practice that I share with others. I also believed that nursing adults, even ones with cancer, would be less harrowing than watching parents and children suffer heartbreak in the pediatric intensive care unit. It is not. It feels the same.

I want to tell you why I am writing this, but not now. Until I process the story and gain some distance and perspective, this is the best I can do. I would like to write a post about something else, but at the moment, I can’t think about anything else. I suspect every nurse has come home from a shift feeling this way.

Today, the sun is shining in Portland, Oregon. And a young person is dying for no reason.

About Roadblocks and the Path of Least Resistance

untitled collage by jparadisi

The other morning, wearing shorts and running shoes, I sat on a tree stump in the shade waiting for a freight train to pass. It was already 80ºF and I should have started out earlier. The train blocked the running path to the bridge leading to a trail along the river. Sitting on the stump, waiting on a train, I started thinking about roadblocks. It has been a week full of roadblocks.

There are different kinds of roadblocks. One kind is temporary and forces you to go around or wait until it passes to continue whatever you were doing. While annoying and time-consuming, this sort of roadblock doesn’t cause you to cancel your plans, just adapt them. You either find another route, or wait for the roadblock to pass, like the freight train. The day before, I was this type of roadblock for a motorist wanting to pull into a parking slot at the same time I was walking through it to my car.  I didn’t know I was a roadblock, because he didn’t use his turn signal. Jumping out of his way, I saw the pink breast cancer ribbon magnet he had on the door of his car. It is ironic to survive cancer and get run over by a driver who supports finding the cure.

Another kind of roadblock causes a complete change of plans.

Yesterday I hung chemo for patients whose cancers are roadblocks in their lives. Even with good prognosis, a cancer diagnosis means that everything in your life becomes secondary to your treatment plan. Jobs, vacations, and holidays are arranged around cancer treatment. Patients ask their oncologists for “time off’ if there is a special event, like a child’s wedding to attend. Oncology nurses instruct stem cell transplant patients to avoid close contact with their young grandchildren, their pets, even fresh fruits and vegetables for a period of time during their treatment.

For me, the most annoying thing about cancer was the lack of control over my time. Cancer is a formidable roadblock. I remember trying to schedule oncology appointments during the first couple weeks of my new identity: cancer patient. I told the patient scheduler I preferred afternoon appointments. She said the doctor would see me at 9 am. I said,  “I run in the mornings; 9 am doesn’t allow enough time.” She said, “not anymore you don’t sweetie, we’ll see you at 9.”  I empathize with people who have chronic conditions requiring frequent medical appointments. Imagine your own body being your roadblock.

The thing about roadblocks is sometimes they force you to take a detour, leading you in a direction you may not have otherwise gone. Instead of pondering “the road not taken,” you find there is no other choice but the path of least resistance. When your life is no longer supported by its foundation, sometimes you’ll find a fresh perspective for rebuilding it.  Lying on the sofa, fatigued from chemo and staring up at the ceiling, you might discover a longing for time to make art and time to deepen your personal relationships. You might decide to sell or give away almost everything you own, and simplify your life to make those wishes real. Everyday decisions are regarded carefully, and considered for whether or not they bring joy. Sometimes a roadblock is the very thing needed to stop what you are doing and check if the life you are living serves you. A roadblock can change your life in positive ways too.

The freight train passed, and I resumed my run. I continued on the path I’d intended from the beginning, because the train wasn’t a significant enough roadblock to cause me to do otherwise.

Oncology and Hospice Nurses Should Read this Article

       Okay, this isn’t the happiest subject to post on a beautiful Friday morning before a weekend, but the topic is important and it’s part of my job to know this stuff. Warning: it’s about end of life treatment for patients with terminal cancer.

      Oncology and Hospice nurses, please read this article in today’s Health section of the New York Times. Whether to turn off pacemakers in the face of terminal illness is a consideration in end of life discussions with patients and their families. Read the article:

Life Saving Devices can Cause Havoc at Life’s End

     Have any reader’s had experiences related to this? 

Pick Me

Absence (installation 2009) by JParadisi

I am five years old, lying on a mat on the floor in a darkened room. Peeking out of the corner of tightly squinted, but not quite closed eyes, I watch Mrs. Sundeman, seated at a child-sized table, place gold stars on our morning’s work. She sits on a child’s chair. With the side of my face pressed against the mat on the floor, her black shoes with stout heels are in my direct line of view. I peer up towards her face, willing her to see I am a good napper. “Pick me, pick me,” I chant silently. “Please pick me.” I force myself to lie still on the uncomfortable mat.  It’s naptime in kindergarten, and I want to be the best napper so Mrs. Sundeman, the teacher will pick me to have the magic pencil. Then I will choose, one by one among the sleeping children, who will get off the mats first by tapping them on the shoulder with the magic pencil. With the magic pencil, I choose who returns to play and who stays on the uncomfortable mats.

I am not chosen. It is not enough to lie still with squinted eyes. Mrs. Sundeman prefers children who dream unconsciously to those who like me cannot lie still without thinking. I do not know how to lie still and not think of something. Even with my eyes tightly closed, I see swirly lines and arabesques in brilliant colors against the black backdrop of my eyelids. My thoughts are full of ideas for pictures I will draw and I struggle not to tell the child lying closest to me, because we are not supposed to talk during naptime.

I am an adult now. I am a Registered Nurse. I hang bags of chemotherapy on IV poles and attach it by tubing to the IV sites of cancer patients looking at me hopefully as if I am administering Jesus in a bottle. They come in hoping for a cure, but many would be satisfied with simple remission, allowing them another birthday, another holiday, another anniversary with their families. I can hear their silent chants, “Pick me, pick me.” I smile at them while setting the pump. I ask if they are comfortable in their lounge chairs. I bring them warm blankets and pillows.

She lies in a lounger. Her cancer refuses to go into remission, and we both know. She no longer chants “pick me, pick me.” I gently hug her body of skin stretched over fragile bones. I never had the magic pencil. I never will. I am not the one who gets to pick, and for that I am grateful.

The Complex Issue of Routine Mammogram Screening: a Personal Experience

photo: JParadisi

     I’ve had one mammogram in my life, and it was bad.

     My mammogram was not for screening; it was to diagnose the lump in my breast that  virtually appeared overnight a few days before. The black and grey films revealed a calcification so dense that a needle aspiration came up without any fluid. “Where is your baseline mammogram?”  the radiologist and the technician both wanted to know. “This is my baseline mammogram,” I told them.  “I’m not 40 yet; my insurance won’t pay for a mammogram until I’m 40.”

     The mammogram results confirmed the need for a tissue biopsy. The lump became a tumor, and 10 years later, I am a breast cancer survivor.

     Over the years, I’ve become more philosophic about surveillance labs. If the cancer recurs, it’s likely to find its home in my lungs, bones, brain, or liver, and I would have some tough choices to make. I’ve made lifestyle changes to increase my odds of remaining cancer free. However, while I believe I’m cured, like all cancer survivors, I know I’m out on visa from Cancerland, and my green card could be revoked at anytime. I’ve learned to make friends with uncertainty.

     My serenity is not unshakable though, as I learned when my daughter called one evening to tell me she scheduled a mammogram, because she found a lump in her breast. She wanted me to go with her. Of course I was going, as soon as I peeled my over-the-top-with- anxiety self off of the ceiling.

     The radiologist knew I was a breast cancer survivor and an oncology nurse. He  handled the situation deftly. Introducing himself to me in the waiting room, he requested I stay there while my daughter had the mammogram. He would call for me when he had the results, and explain them to both of us.

     I waited. As promised, I was called in and her films hung on the light board. I sat next to my daughter as he explained the lump was merely a bit of fatty tissue. Fortunately, my left-brain was functioning, and I could clearly see  he was right, even though part of me wanted to scream, “Just take the damn lump out, let’s be sure, this is my daughter!”  He explained her risks for breast cancer, and that she doesn’t need annual screening.  She is more at risk of suffering from too aggressive treatment than from the disease itself.

     Later, my daughter and I discussed my cancer experience, and how it affects her. I offered to go through genetic testing, but she asked me not to.  She will take reasonable precautions, but like me, she chooses not to live in the shadow of cancer.

Thoughts on Cancer Depression

Kaboom (2003) ceramic, raku, glaze Artist: JParadisi photo: David Forinash

      An oncology patient came in on a low ebb last week. His treatment was long, the fatigue bad, and he told me this was not one of his better days, he was depressed. People going through cancer treatment know there are good days, not so good days, and “today I’m going to lie in bed in fetal position with the blankets pulled over my head” days. He talked out his feelings with me, and said he felt better about things before he left.

     Most cancer patients, including myself, chant the same mantra throughout treatment:  “I just want my life back.” Once remission occurs, and treatment is completed, we think everything will go back to the way it was before B.C. (Before Cancer). Later, we realize that our lives, as we knew them, don’t really exist anymore.

     I was in treatment for breast cancer about 18 months. Previously, I’d enjoyed my house, gardens, and my life before cancer.  After treatment, however, I was only partially joking when I’d say, “If I could afford to be frivolous, I’d light a match, and burn it all down.” There was something cleansing about the idea of fire.
     Anyway, because I’m a nurse, and because I’ve watched others go through life-changing events, I waited it out, and stayed in the house for another year or so. When I still felt like burning it down, instead, I gave away or sold most of my possessions, sold the house, and moved into a new, modified version of my life, which I feel expresses the changes I experienced more clearly. Not everyone is able to change their life so drastically, nor should they, but it’s been almost 10 years now, and I have no regrets. I wasn’t experiencing depression after treatment; it was profound introspection, the gift that sometimes comes from having one’s life footing shaken.
     The caveat given to me by another survivor is this: “You are allowed to lie in bed in fetal position with the blankets over your head for 3 days, after that, you have to call for help.”

Just Because You’re Big Enough to Hold Still (patients, pain & procedures)

    I still experience culture shock, since my transfer from pediatric intensive care to outpatient adult oncology nursing , over the difference in sedation use during procedures for pediatric and adult patients. What allowed me to tolerate 15 years of pediatric intensive care nursing (yes, it is as emotionally challenging as you think it is) was the routine sedation of the child going through procedures. 

   Adult patients know that when their healthcare provider says, “You may experience some discomfort during the procedure”, what we mean is  “This is gonna hurt.” Remember, this is an industry that accepts anal leakage as a reasonable side effect of some medications.  Adult patients are expected to lie still.

   Like during a bone marrow aspiration. My patient cried before the oncologist arrived, but the doctor didn’t see that. She cried during the injection of the local anesthetic too. Her family looked concerned, but no one spoke up.  Nurses, because of our extended contact with patients, are the emotional thermometer in the room. It is my practice to request from the physician a small dose of sublingual lorazepam to offer the patient before such a procedure, just to take the edge off, but it’s rarely ordered, unless the patient demonstrates high anxiety levels in front of the physician, which indicates the patient might not hold still. The procedure lasted only minutes (the oncologist was skilled), but I winced to see my patient hurt. This patient made it through bravely. The physical pain was quick, then over, but the pain of the procedure was potentiated by the fear of a blood cancer diagnosis. Lorazepam does not control pain. It does ease anxiety.  She was big enough to hold still.

   Perhaps I’m sensitized to this issue because I have been a patient needing a biopsy for a cancer diagnosis too. I remember the white noise of anxiety drowning out my ability to hear all of the information presented to me during the early weeks that my treatment plan unfolded.  The surgeon, who was very good, wanted to do a biopsy of my lump in his office. It’s done all the time. I wanted the lump removed, under conscious sedation. That required an OR, and an anesthesiologist, the surgeon informed me. “That’s what I have insurance for,”  was my reply. I know too much about procedures.  I trusted my surgeon, and I wanted to be out while he did what he needed to do.  A member of  his office staff chided me about the request: “You’re a baby, I’ve had several lumps removed in this office myself, and went back to work afterwards.” I complained to the surgeon about the inappropriate comment.

   Like a frightened child, I didn’t want to lie still.

The Volcano Lover

Cinder Cone with lava field in the background photo: JParadisi

Cinder Cone with lava field in the background photo: JParadisi

     Recently, I walked to the top of a volcanic cinder cone in the Cascade Mountain range, in Oregon.  I have been in love with volcanoes for decades now, since I first heard of the ruins of Pompeii in the fourth grade, and  images of cataclysmic geology flowed  like molten lava within my ten year-old imagination. 

     I read the novel, The Volcano Lover, by Susan Sontag, simply because of its title.  It wasn’t  as much about volcanoes as it was about submerged passion and possession, but I enjoyed reading it.

     It was weird, walking on the top of a volcano, though it’s been more than a millenium since its last eruption. Volcanoes in the Pacific Northwest don’t conjure tropical images of the goddess Pele hurling showers of orange and red molten stone at the lovers who displeased her. Pacific Northwest volcanoes are more subtle. They simmer quietly for eons, occasionally belching benign plumes of white steam, seen for miles.

     I didn’t live in Oregon when Mount St. Helen erupted in May of 1980. But I have seen large spirals of steam billow up to the sky from it,  like no cloud I’d ever seen before.  It was a few years ago. I had just gotten off work, and was going to my car on the top of the hospital’s parking structure, when I saw it. A coworker of mine, who I occasionally ate lunch with (we liked the same bench in the hospital’s garden during good weather) was the only other person there to see it. We sat on the hood of his car, watching the phenomenon, and congratulating ourselves for having the best seats in Portland for this spontaneous performance. A year or two later, I can’t remember, this same coworker, who loved nature, his family, and his patients, was shot in the head by an intruder in his home, who stole the very car my now deceased friend and I had sat on that day, watching the volcano, and wondering what would happen next. 

     You never know what’s brewing underneath.

     I thought about all of this while walking the cinder cone. Life is unpredictable. One day you’re healthy, the next, you or someone you love is in an accident, or diagnosed with a life-threatening illness. Or you get a phone call from a stranger, telling you  “I’m very sorry to inform you ma’am, that your loved one was found dead…”

     With this in mind, I refrain from judging my outpatients who irritably or sheepishly ask me to let them go out for a smoke, between their infusions of chemotherapy. A diagnosis of cancer motivates some patients to quit, but others find it so stressful, they don’t have it in them. Some of them berate themselves with guilt, because of it.  I do my duty, and encourage them to quit, but I know first hand that a healthy lifestyle doesn’t guarantee a cancer free life, and out of compassion, I share this knowledge with them. 

     I think about safety, and how to avoid danger, and this quote, from the sci-fi movie Demolition Man bubbles up from memory:

 “I have seen the future. Do you know what it is? It’s a 47-year-old virgin sitting around in his beige pajamas, drinking a banana-broccoli shake, singing, ‘I’m an Oscar Meyer Weiner’.”

     I’m learning that the rules we make for ourselves only create an illusion of control. We have choices, but we don’t have control. Or rather, we have control until it’s taken away from us, through illness, accident, or a violent crime. We walk, not realizing the volcanic turmoil underneath the smooth surfaces of our lives, until an eruption occurs.

     You never know what’s brewing underneath.