Tag Archives: breast cancer

2019: Days of Miracle and Wonder

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These are the days of miracle and wonder 

-Paul Simon

 

 New Year’s Eve 2018 marked the twentieth anniversary of discovering a lump in my breast that proved to be cancer. So began the days of miracle and wonder that shaped the next year and a half of my life, transforming it in ways I could not have imagined at the time.

The Star collage by Julianna Paradisi 2018

2019 marks the ten year anniversary of publishing my first short stories in an anthology, followed by creating and writing this blog, JParadisiRN.

2019 follows a year of internal transformation. Thankfully, none are as dramatic or terrifying as a cancer diagnosis, surgery, and losing my hair, but they are significant enough to have opened my senses to new perceptions and possibilities as I completed the last year of a twenty-year cycle of personal and professional growth.

A former pediatric intensive nurse who’s transitioned into adult oncology nursing, I’m humbled by my survival. I know all too well some people are born to live only a few hours, days or a handful of years, and that cancer kills without remorse or discrimination the young, the bright, the kind. Others go on to live with chronic illness or metastatic disease. To survive an average lifetime is a miracle and wonder. It comes with a burden, or more rightly, responsibility.

I’ve written before I don’t believe in living a balanced life if balance is defined as To keep or put (something) in a steady position so that it does not fall. I still believe this. However, perceptions gained in 2018 have led me to expand my definition of balance to something more like a glass of world-class Pinot Noir: a thoughtfully crafted, satisfying blend of many parts chosen to complement the whole, and not elements distributed equally as though they are the wedges of a pie.

I don’t have a complete grasp of the concept yet, but I’m working on it.

At the end of cancer treatment, my transformation included selling or giving away much of what I owned, including my car. I sold my house and moved to Portland. I changed jobs. I took art school classes.

A couple of years later, I married my husband David.

I am very happy and comfortable in the life I’ve built during the past twenty years since finding the lump. Cancer turned into a catalyst for extraordinary personal growth. In 2018 it became clear to me that it is time to build on the foundation of that growth, moving beyond my comfort zone into whatever is next in my quest for growth and individuation. This time, the transformation is more of an internal thing, although there’s already been a couple of external changes reflecting the internal ones.

This blog post reflects an internal change too. I’ve written before that I write “To the So-What?” meaning in the past I began a post with a clear idea of how I would end it, and why I wrote it in the first place. Now I’m not sure I still believe the So-What is So Important. I am becoming enamored of process without attachment to outcome.

Let me repeat that last sentence: I am becoming enamored of process without attachment to outcome.

If you are a nurse reading this, you have an inkling of the size the internal changes. After all, what are nurses or health care providers without focus on outcomes?

Artists.

Art and Nursing: Exhibiting Art Within a Power Point Presentation About Oncology Nurse Navigators

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The above paintings are original works by Julianna Paradisi, and may not be used or reproduced without permission.

This year, I’ve had a few opportunities to try on the art of public speaking, a newish skill for me. The topics revolved around breast cancer, and oncology nurse navigation.

Recently, I was asked to speak to a group of inpatient oncology nurses about the role of nurse navigators for breast cancer patients, and the application to the hospital setting. Integrating the patient experience throughout the continuum of cancer treatment is a prominent part of what nurse navigators do, and inpatient nurses wanting to learn more (and earned CE) about oncology nurse navigation is exciting.  It demonstrates ONNs have an impact on patient care.

For the occasion, I decided to learn a new skill: creating a Power Point presentation. I know, I know, some of you were making Power Point presentations since your first elementary school book report, but you probably can’t write in cursive as well as an older nurse, or use a real typewriter.

Here’s the stipulation: because I am also an artist, I have a thing against using clip art or stock images from the Internet to illustrate my words. If you are familiar with my blog posts for Off the Charts you already know this.

So, not only did I learn to create, and present a Power Point slide show, I used jpegs from a series of paintings I made of mountains, illustrating the presentation from the perspective of my personal practice. For many, the word navigator connotes images of the ocean or GPS, but as a breast cancer survivor turned ONN, I see myself as a sherpa, someone who has climbed the mountain, familiar with its terrain and potential for treachery. I lead patients  up the mountain, summit, and then come back down. The paintings of mountains also suggest the barriers to care ONNs are tasked with removing for patients. The theme was woven into the closing remarks of the presentation.

Most of the paintings depict Mount Hood, the dominating peak and iconic symbol of Portland, Oregon, my home.

I gave the presentation with a sense of creative satisfaction in finding another way to merge art into my nursing practice.

 

 

 

 

Doing Nursey Things

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Except attending local meetings of organizations representing oncology nursing, and doing continuing education required to maintain my OCN certification, I don’t otherwise do a lot of nursey things on my time off. However, now that I’m an oncology nurse navigator, I feel compelled to get more involved to better serve patients.

Recently, I attended the local Komen Breast Cancer Issues conference. There’s been so many advances in breast cancer treatment since I became a survivor.

A unique feature of this particular conference is that the attendees are a mix of oncology health care providers, breast cancer survivors, and their friends and family. It was the largest gathering in the support of the cure I’ve ever attended.

The keynote speaker was the highlight of the conference: Lillie Shockney, RN, BS, MAS. Patient navigation was created by Dr. Harold Freeman, but Shockney, administrative director of the breast cancer center at Johns Hopkins, is the champion of nurse navigation, and founder the Academy of Oncology Nurse Navigators. While the organization welcomes lay navigators as members, the AONN is dedicated to scientific data supporting patient navigation as a nursing specialty. The author of numerous books, Shockney is also a breast cancer survivor, and I was lucky enough to hear her personal story. Her humor, candor, and authenticity made her an overwhelming success at the conference. At every break, people talked about her, describing which parts of her story most resonated for them.

I briefly met Lillie Shockney at the table where she signed copies of her latest book, Stealing Second Base, about her breast cancer experience. Standing in line with my newly purchased copy, I couldn’t help overhearing the woman in front of me tell Shockney how much she appreciates her work, and listing the multiple times she’d attended her lectures. Pausing, she added, “It sounds like I’m stalking you, but I’m not.”

Every comedian needs a straight man, and this line was too good to let pass. It was my turn. Placing the book on the table for Shockney to sign, I quipped, “I’m a new nurse navigator, and I am stalking you.” She laughed big, and genuine. We talked for a minute or so. She radiates warmth.

Another nursey thing I’m doing: I began reading The Emperor of All Maladies, the Pulitzer-prize winning biography of cancer by Siddhartha Mukherjee. I plan to watch Ken Burn’s three-part documentary based on the book, too. Part one airs tonight (Monday) on PBS (check listings for time), and parts two and three air consecutively the next two nights. Answering the questions and concerns of oncology patients requires an awareness of information presented by the media, and I anticipate being asked if I watched.

So, for a little while, it’s all cancer all the time, on and off working hours.

The funny thing is, I’m enjoying the process.

Nurses: Telling Our Stories Can Help Others

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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

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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

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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

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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

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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

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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

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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.