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.