Down The Rabbit Hole Part II

Down the Rabbit Hole, collage, 2017 by Julianna Paradisi

Just over a year ago I had the opportunity to show some of my paintings and speak to a live audience about the challenges of being an artist, healer, and breast cancer survivor. Artists, Healers, and Breast Cancer Survivors: A Window into Their World was also the name of the show.

My talk took listeners through the primary events of my diagnosis, treatment, and  transitioning from cancer survivor to artist and writer. When I completed treatment I was told there was a 32% chance I wouldn’t survive the next ten years. I considered then, if these were the last ten years of my life What was it I wanted to do?

I came up with three things:

  • I wanted to love deeply, and be deeply loved by the same person
  • I wanted to be an artist
  • I wanted people to say nice things about me when I die (this one is the hardest 😀)

And then a funny thing happened on my way home from the medical oncologist’s office: I lived.

In March 2019 I celebrate twenty years since my diagnosis and treatment for breast cancer.

As I heard myself speak to the roomful of other cancer survivors and colleagues, I experienced the sudden realization I have reached my goals. Although all three need continual care and practice, the time has come for me to think about what comes next. What new goals should I set?  How do I become a better version of myself?

After all I’ve been through in my life I should have been better prepared. When you decide to ask the questions, you need to be ready for the answers. Asking life challenging questions with intention is Going Down the Rabbit Hole, Part II. 2018 has been a year of renewed discovery, self-reflection, and a little bit of rocking the boat. It’s been a year of fabulous highs and a few painful lows. Just like surviving cancer, I am stronger for it.

As 2018 comes to an end, I face 2019 with renewed intention and focus.

I’ll be writing more about the process.

 

SirenNation Art Show Opening

On the right: Quickened Toward All Celestial Things, by Jparadisirn, 2018 on display through November

Imagine my surprise to find my painting Quickened Toward All Celestial Things has been given a street view exhibition space at Portland 5! Thank you @SirenNation for an awesome opening reception tonight.

On exhibit through November as part of the Siren Nation Visual Art Show Portland 5 Centers for the Arts Antoinette Hatfield Hall, 1111 SW Broadway, Portland, OR 97205

Crows have mythological meaning in many cultures. They are messengers from another dimension, shape shifters, and symbols of transformation. The title is adapted from a line Emily Dickinson wrote in a letter to a friend:

“Dear Friend,
…Quickened toward all celestial things by crows I heard this morning-accept a loving caw from a nameless friend.”

 

Quickened Towards All Celestial Things
graphite, acrylic, oil on wood 20″ x 20″ 2018 by Julianna Paradisi

SirenNation Visual Art Show, Portland Oregon, November 2018

Quickened Towards All Celestial Things
graphite, acrylic, oil on wood 20″ x 20″ 2018

Quickened Towards All Celestial Things, graphite, acrylic, oil on wood, 20″ x 20″ by Julianna Paradisi 2018 https://jparadisirn.com/gallery/
On exhibit in November as part of the Siren Nation Visual Art Show Portland 5 Centers for the Arts Antoinette Hatfield Hall, 1111 SW Broadway, Portland, OR 97205
Save the Date! Opening Reception: Thursday, November 1, 2018 from 5:00 to 8:00 pm.
Beverages and complimentary snacks available. All ages!

Book Review: Sky the Oar, Poems by Stacy R. Nigliazzo

Sky the Oar by Stacy R. Nigliazzo, Press 53, 2018

Sky The Oar

poems by Stacy R. Nigliazz

Publisher: Press 53, 2018

Stacy R. Nigliazzo is a poet living in Houston, Texas. She is also an emergency department nurse. Her second published collection of poetry, Sky the Oar, like its predecessor Scissored Moon is informed by her experiences as an ER nurse.

I once had a painting instructor who read a poem to his class before each lesson. He said, You need poetry to be a painter. I would add, You need poetry to be a nurse. Nigliazzo creates poetry from the struggles of the human condition nurses witness daily.

Unlike medical surgery or ICU nurses, ER nurses treat and care for their patients for short spans of time. The poems of Sky the Oar reflect these brief, intense encounters. They are fleeting thoughts and images occurring in the internal dialogue of a poet too busy caring for the person beneath her hands to attach judgement to their plight.

Nigliazzo’s words are crisp and precise, things of beauty without sentimentalism or euphemism. The words are like shards of glass glittering in our hands, their edges sharp enough to pierce the skin. Her poems elevate these crystalline splinters of humanity for our understanding and compassion. In I Am and Nocturne, I found myself at the bedside with her. In the poem Frequently Asked Questions By My Patients, Nigliazzo captures a patient’s experience in a mere nine words.

Sky The Oar is poetry for all readers. For nurses, the slim volume is salve for the soul.

 

 

 

 

 

 

 

AJN Best of The Blog Features Post by JparadisiRN

Manicure by Julianna Paradisi 2014

It’s an honor to have my post and illustration,  A Brief Meditation on Love, Loss, and Nursing, originally published on Off the Chartsthe blog of the American Journal of Nursing, featured in the February issue of AJN

Click on the link above to read the issue online, and find look for Best of the Blog, A Brief Meditation on Love, Loss, and Nursing, in the table of contents.

 

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.

 

 

 

Back From The Digital Future: My Return to Paper and Ink Books

Tiny Lending Library ink on paper by Julianna Paradisi 2018

My adult life I’ve had an unreasonable fear of being without a book to read. The anxiety is triggered when I travel, particularly by air. I trace its beginning to childhood when, on a family vacation to visit my grandparents in Italy, our plane was delayed in Germany for hours due to bad weather. Eventually, all passengers were shuttled by bus from Frankfurt to an airport in Stuttgart, continuing our flight to Rome.

I was in the fifth grade, stranded in a foreign airport with nothing to occupy me for twelve hours. My personal Hell was exceeded only by my parents’: they had to manage my boredom along with my six year-old brother’s, and toddler sister’s, also stranded. Fun times.

From then on, I travel with whatever book I’m reading, and if nearing its end, at least one other book, or more, depending on the planned length of stay. I know books are sold at airports, but I’m unwilling to take a chance on their selection. Problematically, my books take up space, and add weight to my luggage, interfering with my desire to travel light.

The invention of digital readers changed this. I live near one of the best independently owned book stores in America, and I apologize to all small, independent book store owners, but the ability to download books to a slim, lightweight device, and buy more books from virtually anywhere I travel was a game-changer, until last year.

Last year, the hospital  where I work installed a Tiny Lending Library in its Healing Garden.

In case you’re unfamiliar with Tiny Lending Libraries, they’re a thing, with their own organization, and website. The movement began when people built cases, or sometimes simply placed boxes filled with books in their neighborhoods, inviting their neighbors to “take a book, and leave one behind.”

Besides the satisfaction derived from the printed page of a book, the experience of handling a used book left by someone wanting to share it provides a connection to the neighborhood, and the people who live there.

At work, I stop to see what’s on the shelves in the Tiny Lending Library if it’s not already being examined by staff or neighbors. The selection changes often. So far, I’ve borrowed six books, and left twice as many.

Once again, there’s a stack of unread books on my nightstand. I carry the one I’m reading with me to work, in case I have time on my lunch break to read a page or two. Eventually, it will take its place in the Tiny Lending Library.

I wonder how many of the books from the Tiny Lending Library make their way into hospital rooms, carried there by family or friends visiting a patient who is stranded by illness or injury, and worried about not having enough books to read?

 

 

 

Applying Nursing Process and Knowing When to Quit

The Queen of Cups II
Collage 6.5″ x 4.75″ by Julianna Paradisi 2017

It was several more days later   before I ripped out the knitted sleeve I wrote of in my last post. I blame part of my reluctance on nursing process: Nurses are trained (to the point of reflex) when confronted with a problem or undesirable outcome to devise further interventions to create the desired outcome. Likewise, I attempted to apply nursing process to the problem of the knitting mistake.

I measured the sleeves of my favorite sweaters, discovering I habitually wear sleeves an inch or so longer than the pattern I’m using prescribes. Then I did some math, and calculated I could still make all the required increase stitches, if I were willing to accept a longer sleeve, but it would be a very close call between longer and too long. As an artist, and nurse, I felt compelled to take the challenge. Artists like to work with process too.

The hard part about nursing process, however, is knowing when to call it quits: How far backwards is one willing to bend to make something work? This can also apply to dysfunctional relationships or work environments. Carrying out interventions beyond the limits of healthy boundaries quickly becomes denial and co-dependence.

In the end, I conceded the sleeve was too long. I ripped out every stitch, turning my head away so I didn’t have to look, the way a patient undergoing a procedure with only local anesthetic does while the doctor takes a scalpel to their skin.

The deed is done. There’s no more anxiety about the outcome. I did what I had to do.