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?

JParadisi RN Guests on RadioMD.com Staying Well Monday October 15 10:20 am PT/ 1:20 pm ET

Ravens by jparadisi

Today, Monday October 15 at 10:20 am PST/ 1 pm EST, I’ll be a guest on Staying Well hosted by Melanie Cole, MS on her radio program, Staying Well, broadcasted on the national internet station RadioMD.com. Melanie and I will discuss the effects of cancer on relationships. Readers of this blog know I am not only an oncology nurse, but also a thirteen-year survivor of breast cancer.

Topics include maintaining relationships during cancer treatment, how to talk to your children about your cancer, and tips for having the best quality of life during treatment.

I hope you’re able to listen: Staying Well on RadioMD

A Member of the New Uninsured Apologizes to President Obama

I Wish I Could Have Sold More Cookies to Pay For My Surgery photo: jparadisi 2011

In previous posts, I propound Universal Access to health care. I’m not particularly attached to whether states individually create their models, or if it is federally operated. I believe no one should go without health care.

As I’ve written before on this blog, the faces of the uninsured are changing. Yesterday, the Los Angeles Times featured an Op-Ed, Breast Cancer, Health Care, and a Public Apology to President Obama, by Spike Dolomite Ward, who typifies the New Uninsured. Her plight describes that of many of the patients admitted to the outpatient oncology infusion clinic where I work.

Many people tell me, “I take good care of my health. That’s my health care insurance.” Ward’s essay illustrates how that sort of believism isn’t enough.

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.

Race for the Cure

Race for the Cure 2011 Portland, Oregon photo: jparadisi

I’m watching runners, women and men, young and old, Running (some are walking) for The Cure this morning. I’m thinking about the women I knew, patients and friends, who did not survive. I’m remembering that 12 years ago, I went through treatment, and it’s the luck of the draw that I am disease free. Thanks to Komen and other organizations that contribute to making treatment more effective, saving more lives.

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.

Living In Your Body After Cancer is Like Staying With an Unfaithful Lover

Potted Tulips photo by jparadisi

I’m lying prone with my face planted in a holder similar to the kind on a massage table. My left hand holds a soft rubber ball at my side, which I am instructed to squeeze at the first sign of discomfort. My body is swathed in two warm blankets, because the room is cold, and through the headset I wear to protect my ears, the tech in an adjacent room tells me to hold as still as possible. She explains how many minutes each slice will take. As the MRI begins, I will my body to meld into the table and begin a post in my head to distract myself, but the interruption of the tech’s voice between slices makes that impossible, so I begin to count the hammering sounds of the machine instead. Bah-dipa-dipa-dipa-dipa-dipa-dipa-dipa-dipa-dipa-dipa-dipa-dipa-dipa-dipa-dipa, fifteen rapid blows that sound like a pile driver pounding steel pilings into the ground during the construction of a skyscraper. That noise is followed by the organic sound of a chirping bird, which the tech says indicates the time between the magnetic resonance images. I lie this way thirty minutes, and after each couplet of pounding and bird chirping, the tech tells me I’m doing a fabulous job of holding still. Through the microphone of the headset, I say, “I aim to please,” and she says “What?” I say it again, and this time she laughs.

I am in this position, because late last Sunday night, or maybe it was very early Monday morning, I woke up from a sound sleep caused by a very sharp pain running across my chest. It was so sharp, I said,”Ow,” and woke David from his sound sleep. It hurt no matter which side I lay on, and even lying on my back. By morning I had a low-grade fever, and every muscle in my body hurt. I slept most of the day. On Tuesday, my chest ached rather than hurt, I had a headache, and the low-grade fever, so I made an appointment with my primary care physician and saw her in the afternoon. That’s how I ended up on an MRI table Wednesday morning.

On Friday evening, my doctor called with the MRI results. She said, “Well, the good news is the bad news; there’s no cancer, but there are bilateral ruptures of the implants used for your reconstruction. You need surgery.” I am relieved. Even though no one said the “C” word out loud, we were worried. Living in your body after it tried to kill you with cancer is a little like staying with an unfaithful lover. You might be able to forgive it, but you never forget.

So, I’m feeling like crap from the inflammatory response to the ruptures, waiting for the insurance company to authorize a surgical consult. I’ve been lucky. The expected life span of implants is ten years, and I’m going on twelve. Reconstruction options and issues come with the territory of surviving breast cancer.

The journey continues…

No information provided in this post or on this blog is medical advice. If you experience similar symptoms, or have concerns about your personal health, contact your licensed medical provider immediately. If it is an emergency, call 911.

Looking for Bombs and for Tumors: When Does Risk Outweigh Benefit?

November 27 2010, Pioneer Square, Portland, Oregon after foiled bomb plot. photo: jparadisi

On Friday night, to coin the phrase of writer Anne Lamott, I began the “sh#*tty first draft” of a new blog post discussing the TSA’s use of full body scan radiation at the airport. I’ve blogged before about how the health care industry looks to the airline industry for quality control ideas. The TSA uses two kinds of scanners, and one of them uses radiation with little safety monitoring for the cumulative exposure of their employees, airline passengers, or flight crews. Health care can provide quality control models of x-ray scanner safety to the TSA.

Overnight, my plans changed.

On Saturday morning, I awoke to the news that the FBI thwarted a terrorist bomb plot in my hometown of Portland, Oregon. 19 year-old Mohamed Osam Mohamud of Corvallis, Oregon tried detonating a van loaded with what he thought were 55-gallon barrels of explosives during the annual tree lighting ceremony in Pioneer Square, “Portland’s Living Room.” An estimated crowd of 10,000 people, many of them children, was gathered in the square. According to news reports, the terrorist said he wanted everyone “to leave the square dead or injured.” Thanks to FBI intervention, the bomb was inert.  No one was physically injured, but terrorism has found its way to my front door. I went to work on Saturday morning with a heavy heart.

When I found a tumor hidden like a bomb inside my body, I wasn’t 40 years old yet. Overnight, my life changed. Despite my personal experience, the new recommendations for mammograms suggest that risk outweighs the benefit of screening for most women under age 50. According to the task force, regular mammograms for women aged 40-49 over a 10 year period saves one life out of every 1,904 women screened. Their data suggests that the risk of breast cancer is too small to warrant mammograms for women younger than 50. Self-breast examinations, once vigorously encouraged, are no longer considered reliable.

I wonder how many people have to receive a full body scan in order to apprehend one suicide bomber at the airport? Are the enhanced pat downs effective? The TSA focuses on preventing mid-air explosions, but what prevents a terrorist from designing a less spectacular bomb that detonates in a crowded airport during a TSA pat down, or by a hidden accomplice while the suicide bomber steps into the scanner?  The car bomb in Pioneer Square did not arrive via the airport. Can the TSA’s addition of full body scans and enhanced pat downs really protect our society from malignant harm? At what point does risk outweigh benefit?