In my latest post (and illustration) for Off the Charts, the blog of the American Journal of Nursing, I share clinical observations about oncology care, before and after the ACA was signed into effect.
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.
The following post is the second of a series resulting from preparations for a forthcoming breast cancer conference panel discussion on survivorship.
When I was diagnosed with breast cancer I was a pediatric intensive care nurse working twelve-hour shifts, a long-distance runner, practiced weight-training, and a gardener. After the diagnosis, these activities came to an abrupt halt. Surgical procedures meant no running for weeks at a time. Weight training was limited by restrictions. Chemotherapy meant avoiding infectious patients, let alone managing critically ill children with my chemo-brain. Gardening was okay, but only so long as I didn’t get cuts or wounds that could become infected due to a lowered WBC.
Surrendering an active lifestyle in exchange for the other side of the bed was not an easy adjustment, and I held out for as long as possible. During treatment I didn’t have the energy to participate in these activities to the same levels as before. I continued running after my first chemotherapy infusion until one day I completed 1 1/2 miles and then completely bonked. I had to walk back home that 1 1/2 miles with bone deep fatigue. Grudgingly, I gave up running while on chemo.
For some, physical activity is a go-to method of stress relief. For many cancer patients, when this tool is needed most, it is unavailable. It requires developing new tools for managing stress.
It’s important for nurses and health care providers who are not physically active to understand that a lack of physical activity actually creates stress for patients who are. It’s one reason your adolescent and young adult patients often become sullen. Physical activity is part of their mind-body connection.
The median age of breast cancer diagnosis is 61, so It follows that many hospital-based exercise classes for breast cancer survivors are structured with the intent of increasing physical activity and function for older, sedentary survivors. While beneficial, these classes may not meet the needs of the physically active, regardless of their age. Breast cancer patients who beg to continue swimming, running, bicycling, and even skiing are not uncommon. Here’s some exercise tips for physically active breast cancer patients:
- Review your level of physical activity with your medical oncologist and surgeon before resuming or starting an exercise program. Surgery remains the cornerstone treatment for breast cancer, and physical restrictions apply post-operatively to promote healing. Mastectomy, reconstruction, and lumpectomies require different periods of recuperation. Some chemotherapy regimens used to fight specific types of breast cancer have potential to affect the heart. Those with metastatic disease may have other restrictions. Forgoing your activity of choice is difficult, but it’s important to remember that taking the time to heal is an investment in overall wellness.
- Consider alternative forms of exercise. Walking is commonly prescribed during treatment. Meditation labyrinths are a great way to get some exercise and practice mindfulness at the same time. Some hospitals, spiritual centers, and churches have them. Ask about stair climbing-I used a Stair Master (once cleared by my surgeon), and did not have the energy to run outdoors. Running machines are another option: If you get tired, you can stop without having to get back home.
- If you are medically cleared to use a gym make sure to bring antibacterial wipes to wipe down the machines before use, if they’re not provided: If you are receiving chemotherapy, you are more prone to infections from opportunistic germs. If you take a yoga class, (another commonly recommended activity for breast cancer patients) bring your own mat, and wear plastic flip-flops to avoid fungal infections from the studio floors.
- Remember, physical fitness is not what you do in the short-term, it’s an accumulation of activity throughout a lifetime. Going through breast cancer treatment tests your body; it’s working hard. Support its healing through good nutrition and adequate rest.
Opportunity is missed by most people because it is dressed in overalls and looks like hard work.
Wishes do come true, whether you believe or not. The caveat is that the answer doesn’t always align with the expectations of the wisher. This is why about half of the human population believes in wishes, prayers, or manifestation, and the other 50% does not.
This is also how someone like me finds herself in a fortunate predicament: my wishes were granted. I’ve obtained the proverbial three vocations I love. One makes money (as an oncology nurse navigator), another keeps me in shape (running and barre classes), and the third allows me to be creative (painting, drawing, writing, and blogging). Often the first and third converge as demonstrated in this local new feature.
The oncology nurse navigator role that I love so much is newish for me, and as such, takes hours a week of research and continuing education beyond the actual job. It is also a 40-hour workweek kind of job. Prior, I worked nearly, but not quite full time. That little bit of edge apparently makes a difference in my creative out put. I have not abandoned painting; for instance these portraits I made as a Christmas present for a family member.
More often, however, I get off work, make myself go for a run or to the exercise studio, and then, once home, gravitate like a moth to flame to the biggest time-waster for all creatives: the Internet. Weekends are consumed with household tasks. I realize most Americans live by this routine, and if I were suffering from creative block perhaps I could live with it too, but the truth is I have as much inspiration for writing and making art as ever. What I’ve lacked is the discipline to prioritize my time. Starting with baby steps, one of my goals for 2016 is to write or draw for 15 minutes every day. It can be a chapter of The Adventures of Nurse Niki, a post for this blog, a journal entry or a quick sketch of my sofa, but everyday I will make something. I’ve already started. I set a kitchen timer to keep me honest. Most days I end up going for more than 15 minutes.
The April 2015 issue of the American Journal of Nursing is available. On page 43 of the print version is Yazzie, a painting I made The Art of Nursing Column. In the accompanying text I discuss the challenge hanging original art in a health care setting. You can view a pdf of Yazzie and the accompanying text at AJN Online.
The paintings on exhibit in the clinic, including Yazzie, are for sale. I will donate 20% of the sales prices to The Knight Cancer Challenge, dedicated to raising research money to find the cure for cancer. The fundraising ends in February 2016. You can learn about the Knight Cancer Challenge by watching their cool video here.
If you watched the recent airing on PBS of The Emperor of All Maladies, you’ll recognize Dr. Brian Druker, the inventor of Gleevec, as the face of OHSU cancer research.
If wishes were horses, this 17-piece collection titled, Works on Paper: Monotype Prints and Paintings would be purchased and donated to the walls of the clinic where they are now hanging, so the patients can continue to enjoy them.
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.
One aspect of changing nursing specialties, or being a new nurse for that matter, is the agreement to do homework to get up to speed. Being a certified oncology infusion nurse, while helpful, does not make me an expert in my new oncology nurse navigator position. Though working with preceptors who generously share learning, the responsibility of identifying my knowledge gaps, and seeking resources to fill them is mine.
Newly graduated nurse, I hate to break this news to you: graduating from nursing school doesn’t mean you’re done with homework. It’s the opposite. Nursing school provides the tools for finding information you need to succeed in any nursing job throughout your career. I’m serious. When early in my career a pediatric intensive care nurse befriended me, and agreed to be my mentor, the first thing she did was hand me a hardcover, 1,000+ page copy of Mary Fran Hazinski’s then gold standard text, Nursing Care of The Critically Ill Child, saying, “Read it. You can keep it too, because I just bought the newest edition,” cluing me in that expert level nurses continue learning.
I read the tome twice: the first time by looking up the diagnoses of every patient I was assigned to learn their assessment, and then understand the medical care plan. The second time, a few years later, I read it cover to cover preparing for pediatric CCRN certification.
In similar fashion, these days my evenings and days off are occupied with an hour or more of reading about nurse navigation. Yes, I’m a bit of a nerd, but the fact is I haven’t been this excited about nursing in years. Nursing school is just the beginning of a career of learning.
A goal is a dream with a deadline.
-multiple Internet attributions.
I have a new job, one that I envisioned when I transitioned from pediatrics to oncology nursing in 2001.
I am an oncology nurse navigator.
If you don’t know what an oncology nurse navigator is you’re not alone. Most of the time when I tell another nurse about my new job, his or her eyes go blank, and I get a sincere, but confused, “Oh congratulations!” Surprisingly, or maybe not, it’s my layman friends who get it right away, “It’s about time the medical profession started hiring people to help us find our way through the complexity of health care.”
I can’t agree more.
Patients are referred to a navigator after a diagnosis of cancer. The role involves patient education, distress assessment, providing resources, and emotional support throughout treatment. The goal is patient-centered care that prevents patients from “falling through the cracks” of the health care system. Confusion arises because some duties of the nurse navigator resemble those of case managers and social workers, however, nurse navigators offer comprehensive oversight of patient care needs, and advocacy. Further, the American College of Surgeons’ Commission on Cancer mandates patient navigation for cancer program accreditation. A source of more information is the American Academy of Oncology Nurse Navigators’ website.
One of many adjustments is my work hours have increased from nearly full-time to full-time. But there’s so much to write about! As I get a handle on things, I suspect the focus of JParadisiRN blog will shift closer than ever to “where science, humanity, and art converge.”
Hope is the thing with feathers t hat perches in the soul, and sings the tune without the words, and never stops at all,
And sweetest in the gale is heard; and sore must be the storm that could abash the little bird that kept so many warm.
I’ve heard it in the chillest land, and on the strangest sea; yet, never, in extremity, It asked a crumb of me.
A few weeks ago I witnessed a miracle.
No, really, I did.
While running along the Willamette River in Portland’s Waterfront Park, a flock of seagulls (not the punk group; the kind with feathers and wings) scavenged for food several yards ahead. From the neck of one of the birds a plastic grocery bag dangled in the sight breeze like a cape.
In 2011 Portland’s city council outlawed the use of plastic grocery bags by retailers for environmental reasons. This sea gull’s plight illustrates one.
The bag was a death sentence. Besides scavenging, gulls feed by dipping for small creatures from the river, and this action will fill the bag with water. When the bag becomes heavy enough, it will sink below the river’s surface and drown the gull.
From habit, my nurse’s brain searched rapidly for an intervention. Briefly, the ludicrous image of me somehow restraining the bird and removing the bag flashed by, but before I was completely convinced of this impossibility, the birds took flight and landed on the river including the unfortunate gull with the plastic bag cape fluttering behind.
“Oh no,” I thought.” I’m going to watch the poor bird drown.” Mesmerized the way people become when they can’t avoid watching a train wreck I stopped running and leaned against the rail of the sea wall, following the bird with my gaze.
The gull bobbed on the river’s current, the plastic bag making him easy to spot. He dipped forward and placed his beak beneath the surface of the water. I saw the bag fill, then sink. Pulled down by the weight of it, the gull fought, flapping its wings wildly as it struggled to take flight.
“This is it, I said out loud, though no one else was watching.
But it wasn’t it. Miraculously, the bag slipped away from the gull and he was airborne. I watched the bag, half submerged, float down the river like a malignant cell seeking another victim.
Okay, maybe it wasn’t a miracle, but it felt like one. I had been so sure the gull was doomed.
Maybe the miracle is that I received an object lesson about embracing phenomenon, to stay hopeful, to marvel.
Because hope is a feathered thing.
One of my hands is soaking in a shallow bowl of soapy water, while a nail technician holds the other, turning it one way, then the next. She files my chipped and broken nurse’s fingernails into a more attractive shape. As she does so, she says “relax” whenever I hold my hand too stiffly for her to manipulate it. This catches my attention, because I had just come from work, where I’d spent the day starting IVs in patients, telling them, “relax,” so the catheter would thread more easily into their veins.
I often preface starting an IV with, “I know this is easy for me to say, being I’m not the one getting stuck with the needle, but the more relaxed you are, the easier this will be.”
I realize that a manicure is a much more pleasant experience than having an IV placed. What manicures and IV starts have in common, however, is the need to trust someone, often a stranger, touching your body, and literally putting yourself in their hands.
With this in mind, I’m astounded by the trust patients put in nurses. I mean, think about how we poke them with needles, whether in their chest ports or in peripheral veins, and then infuse chemicals otherwise known as “chemotherapy” into their bloodstream; medications so potent that the patient signs a consent allowing us to do this to them. The chemicals are so powerful, in fact, they can cause other varieties of the very disease (cancer) we administer them to cure.
This is a pretty huge demonstration of trust.
Once a hairstylist stylist told me, “When I cut someone’s hair, I’m in their sacred space.” I’ve kept this statement in mind ever since, whether it was performing a bed bath in the ICU, or now, taking a blood pressure or drawing blood from a vein with a butterfly needle.
No matter how clear our communication with patients, no matter the level of caring we demonstrate, if we forget that we have entered the sacred space of our patient’s body, these administrations will not be received with the intended appreciation.
Developing a soft touch in patient care, whether it’s honoring an adhesive allergy by finding a less irritating occlusive dressing, offering to numb a peripheral IV site or port before inserting a needle into it, or simply placing a hand on the shoulder of a patient who is visibly upset, are ways we tell patients we respect the sacredness of their bodies. We are there to help them relax.