Down the Rabbit Hole

Down the Rabbit Hole, collage, 2017 by Julianna Paradisi

Why is it 2018 feels more like “2017, The Sequel, and not an actual New Year?

While I have one or two friends who’ve had an immediate change of luck, many more of us are experiencing 2018 as a poorly constructed, run-on sentence (or rambling blog post) with little progress or clear goals for the future.

Progress requires a release of perceived limitations, and expectations. The process of releasing creates tension similar to a snake shedding its skin, or a butterfly breaking forth from its chrysalis. Things become too tight and uncomfortable before breakthrough occurs.

Nearing the end of January, the growing and stretching feels more intense than in previous years, and I find myself sympathizing with Alice for choosing to follow a rather strange rabbit down a hole, without thought of where it would lead, or how she would return. “Don’t over think it, just do it.”

Choosing to go down the rabbit hole is not a characteristic of most nurses. Nurses like clear goals, something to steer towards, whether it’s gaining a patient’s trust by managing her pain, meeting discharge goals, or simply relieving a fever.

Measurable goals work in nursing. They’re admirable, and create safety.

* * *

Safety. What is safe?

As an oncology nurse navigator, and a cancer survivor, my patients and I grapple with this question daily: How to balance cancer prevention (safety) with an enjoyable and fulfilling life?

If you believe the answer is easily found in NCCN guidelines, and AJCC recommendations, you are most likely not a cancer survivor. Being a cancer survivor is “going down the rabbit hole.”

* * *

Being an artist and writer demands a willingness to go down the rabbit hole; a comfort level with uncertainty.

The challenge of life is learning to live somewhere on the continuum between safety, and recklessness.

Hank Stamper, the burly central character in Ken Kesey’s epic novel, Sometimes a Great Notion, about Oregon’s logging industry, argues towards recklessness:

“Hank would have been hard put to supply a reason himself, though he knew it to be true that Lee’s presence at the Snag tonight was important to him…maybe because the kid needed to see first-hand what kind of world was going on around his head all the time without him ever seeing it, the real world with real hassles, not his fairy book world of his that him and his kind’d made up to scare theirselfs with.”

* * *

Progress begins by asking questions.

What is safe? What is reckless? Should a predictable outcome dictate the beginning of a new enterprise?

An explorer would answer, “No.”

Alice returned from Wonderland, having viewed strange, new perspectives, and with a bunch of great puns. I assume she counted it a good experience, because she went back for a second trip Through the Looking Glass.

Here’s to going down the rabbit hole, and leaving 2017 behind.

 

 

 

 

 

Cancer Survivorship: Breaking The Myth of “Nurses are Bad Patients”

The Queen of Cups I collage by Julianna Paradisi 2017

Are nurses are the worse patients?

Upon completion of treatment for breast cancer, my surgeon remarked, “You got through treatment really well. In the beginning, I didn’t think you would.”

The comment struck me as odd, but I was curious. “Is this because I cried when you diagnosed me?”

“Yes.”

Thoughtfully, I replied, “I cried because I understood the diagnosis. I understood it would change my life.”

In return I received a patient smile.

The first plastic surgeon I chose was forthright in his opinion of me as a patient, however, “You nurses are the worse patients.”

I asked, “Are we your worse patients, or your most educated ones?”

He promptly discharged me from his care.

* * *

I received excellent treatment for breast cancer. My survival and good health are proof. But there were gaps in the emotional support I received.

It’s been nearly two decades since I had breast cancer, and all those years I accepted the label of being “a bad patient;” the one that asked questions, the one needing proof the  medical recommendations were best practice.

Then I became an oncology nurse navigator, with patients who are nurses. They have taught me I was not a bad patient, just a nurse-patient, set apart from non-nurse patients. And there are subsets of nurse-patients I help: those bringing an oncology background to their diagnosis, and those who don’t.

Nurses assume accountability for their care

Nurse-patients with oncology backgrounds manage their cancer diagnosis differently than their colleagues without. I suspect this is because they bring their own toolbox: They work with oncology surgeons, medical oncologists, and radiation oncologists. They personally know and handpick their treatment team. They’re still scared, but the support they seek is more pragmatic: how-to’s for managing treatment, work, home, and family life.

Nurses without an oncology background wonder if we are referred to top-notch practitioners, and receiving state-of-the art options, contributing more stress to our cancer diagnosis. We tend to get second, and sometimes third opinions about treatment recommendations. We are more likely to travel to nearby cities (and sometimes other states) with larger, nationally recognized cancer programs for consultations. We may delay starting treatment to fit in the extra consults. Our family and friends may not understand why we won’t simply “do what the doctor says.”

Here’s my unproven hypothesis explaining why this happens:

The Hot Seat: Nurses are compelled to advocate for themselves

Nurses, in our role of patient advocate, are educated to question doctors. We are accountable for catching, and preventing mistakes.

In my nursing education, this training happened early in the morning before our clinical days, in a potentially brutal ritual dubbed, “The Hot Seat.”

In “The Hot Seat” one by one, nursing students gave report on the patient (s) they were assigned that day: diagnosis, age, treatment plan, and goals for outcome. Our instructor cross-examined each student about everything: medication indications, dosage, side effects, and lab values to monitor. She inquired about imaging, and anticipated needs the patient may have at discharge. The more questions a student answered correctly, the more difficult the questions became. The fewer answers a student mustered, the hotter the seat became.

Nurses know unasked questions lead to harm

In The Hot Seat we learned critical thinking means always ask the next question. It’s the question you forgot to ask that leads to harm.

Nurses know the importance of asking questions. When we seek treatment outside of our specialty areas from doctors we do not know, we manage the stress by asking, “Why?”

My understanding of this means that nurses are some of my favorite patients. I remember what I needed to know to ease my stress during cancer treatment, and I offer it to my nurse-patients. Once they understand how oncology treatment works, they often become so independent in caring for themselves I rarely hear from them.

And I’ve certainly never discharged one from care.

 

 

 

A Nurse’s Sketch Book

 

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Nearly a year ago, I wrote a post about mindfulness and found time for creativity, in which I described how I used downtime spent in waiting rooms to draw, or more accurately, for advanced doodling.

The practice continues. This year, I purchased an inexpensive set of crayons, which I keep in a desk drawer. During my lunch break, I take a minute or two to add a splash of color to the ballpoint pen ink drawings. None took longer than 15 minutes to sketch, usually much less.

These rough sketches don’t take the place of painting in my studio, but, there’s a certain satisfaction that comes with adapting to challenges of managing time, learning to juggle purpose and passion. Nursing provides purpose rooted in service, and passion (or a reasonable facsimile of art) blossoms from its branches. Like spring flowers following a severe winter, it will not be denied.

 

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.

 

 

 

 

Art & Nursing in The Clinical Setting: An Interactive Experience

Recently I had a unique experience as an artist and nurse.  At the hospital, I was stopped by someone I vaguely thought was a former patient, or perhaps a family member or supportive friend of a former patient, I really don’t remember.

Lung Ta (Wind Horse) oil stick on vellum 2007 by Julianna Paradisi

Lung Ta (Wind Horse) oil stick on vellum 2007 by Julianna Paradisi

This person, however, not only recognized me, but knew I painted the art hanging in the infusion clinic where I once worked.

“You sold the horse print.The one over the reception desk.”

“Yes.”

“I really liked it. It was good. It was a print, right?”

“Thank you. Well, actually no. It was an original painting. I used oil sticks to make it.”

“What are oil sticks?”

“They’re similar to oil pastels, but big, like cigars. In fact, painting with them feels like how I imagine painting with a big, greasy cigar might feel. But they air dry over time, unlike oil pastels.”

“That sounds really messy, but your painting looked neat and precise.”

“Thank you.”

Mt Hood Triptych #2 oil on canvas 2016 by Julianna Paradisi

Mt Hood Triptych #2 oil on canvas 2016 by Julianna Paradisi

“I really liked it.”

“Thank you. So what do you think of the painting of Mt Hood I made to replace it?”

The the expression on her face gave her away, so I threw her a bone.

“Not so much, right?”

“It’s okay. I liked the horse.”

“I really appreciate your comments,” and I meant it.

As an artist I’ve stood through many gallery openings and art receptions. It’s rare for anyone to ask about what inspired the art, or how it was made. No offense intended to anyone, but a common experience for artists at gallery receptions is being approached by people wanting to talk about themselves or their art, not yours. They didn’t come to view the art.

I’m enchanted by this woman who spends her time in an infusion clinic considering the artwork on its walls; becoming fond of a particular painting, and wondering how it was made. She wasn’t there to view the art either, but she did. Not only that, but she had access to the artist, who is a nurse going about her nursing duties, until this brief respite, when the two of us discussed the art.

I do not believe such things happen very often to artists or nurses. I am grateful it happened to me.

 

Ode to a Pair of Nursing Clogs

This year I took a summer vacation, one of the joys of which was time painting in the studio.

I’ve migrated to three different studios over the years, but a single constant in each was my old pair of nursing clogs, converted to painting shoes.

My Nursing-Converted-to-Painting Clogs

My Nursing-Converted-to-Painting Clogs

In their earlier life, they spent ten years traipsing across a PICU, and even flew in a helicopter a time or two while transporting sick children in Oregon to Portland.

When I transitioned from PICU to adult oncology, they retired. In their new-found leisure, they started a second career as my painting shoes, where we continued to do good work together.

Anyway, over the weekend I returned to the studio and painted, changing out of my street shoes into the old, faithful clogs. They felt funny. In fact, one foot was suddenly closer to the floor than the other. I looked down, and entire sections of the right foot clog’s rubber sole had disintegrated and fallen off in chunks. As I moved about, the left foot clog did the same. I stared at them in disbelief.  I had not foreseen their imminent demise.

The Disintegrated Soles of My Nursing/Painting Clogs

The Disintegrated Soles of My Nursing/Painting Clogs

I did not have a second pair of studio shoes to change into, so I continued wearing them while painting, standing and walking, balancing on what remained of the core of their sole. We made one last painting together. I tried remembering the last patient I’d nursed while wearing these clogs, but could not.

When I finished painting for the day, I washed my brushes, and swept up the trail of black, crumbled rubber left behind on the studio floor. Removing the old, familiar clogs, I put on my street shoes, and placed the paint spattered, destroyed clogs into the garbage.

Move on. They’re just an old pair of clogs.

Besides, there’s another pair, retired when I left the infusion clinic for the oncology nurse navigator job, waiting in my closet at home to take their place in the studio.

 

 

 

Modern Nurses: Audio/Video Girl

Digital Microscope ink on paper 2016 by Julianna Paradisi

Digital Microscope ink on paper 2016 by Julianna Paradisi

Preparing materials for tumor conferences is part of my role as an oncology nurse navigator. It involves, among other responsibilities, reviewing the cases, printing copies of the agenda for the attendees, managing the sign-in rosters, and providing updated lists of available clinical trials. It also requires powering on the projector, the screen, and setting up the digital microscope necessary for the pathologist and radiologist to project slides of the tumor cells, and the MRI or Cat can images on the large screen for discussion.

Suddenly, and unexpectedly, I’ve become Audio/Video Girl. Other nurses of my generation will appreciate the humor in this.

Does any one remember watching film strips and movies in grade school classrooms? Did your hand shoot up when the teacher asked for volunteers to set up and run the projector? Mine did, but it was always a boy who was chosen. Eventually, I stopped raising my hand.

Years later when I became a pediatric intensive care nurse, I discovered an aptitude for tubes and wires, or rather I learned to get one fast. The ability to troubleshoot a ventilator until a respiratory therapist could fix it became handy too. I realized the level of skill I’d developed when as a single mom I set up my stereo system (you who grew up with bluetooth streaming have no idea how easy you have it), and a desk top computer with printer/fax using a dial-up modem. In case you are to young to know, we could not use our computers and phones at the time in those days.

I digress.

Learning to set up the electronic equipment for tumor conference was a lot like how I learned almost everything as a nurse: someone showed me how to do it once, and then I was on my own. However, as mentioned, I have developed an aptitude for technology: during the demonstration I snapped pictures of the wire connections with my phone, creating a visual reference guide to use later.

I was anxious the first time I set up by myself. While lifting the digital microscope which I imagine costs a hefty portion of my annual salary from its cart to the conference table, I distracted myself from my fear of dropping it by imagining twenty doctors staring at me because it didn’t work. Tumor conference would be a disaster if I failed..

The microscope and projector worked. Relieved, I glanced at the doctors, men and women, seated around the table. Some of the male faces resembled grown up versions of the boys in grade school my teachers chose to run the projectors. Some of them probably drive cars electronically more complex than the audio video equipment I had just set up.

To be clear, I am treated respectfully as part of the multidisciplinary team at tumor conference. I’m proud to be part of this valuable service offered to our patients. I am happy with my life choices. However, I wonder what might be different if girls were chosen equally with boys to run the projectors when I was young?

 

 

 

 

Breast Cancer Issues: Physical Activity During Treatment

The following post is the second of a series resulting from preparations for a forthcoming breast cancer conference panel discussion on survivorship.

by jparadisi 2012

by jparadisi 2012

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.

Doing Nursey Things

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.