It’s an honor to have my post and illustration, A Brief Meditation on Love, Loss, and Nursing, originally published on Off the Charts, the 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.
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.
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?”
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.
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?
It was several more days since 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.
2017 was a challenging year for me in many ways, some good, some not so much, but it ended positively.
In October, I had opportunity to show ten new paintings where I work, part of an exhibition titled Healers, Artists, and Breast Cancer Survivors. A local TV news station covered it. Around the same time, I was interviewed for a local magazine, also about being an artist, oncology nurse navigator, and breast cancer survivor. I admit, I felt very good about both, because 2017 was a difficult time for pursuing my goals as an artist.
Part of the hospital exhibit was an artist talk. I spoke about how my arts career was launched when I completed cancer treatment, and was told I had a 32% chance of dying in 10 years from disease recurrence. Blah, blah, blah, I decided if I were to die in 10 years there were three things I wanted to do:
- Become an artist
- Fall deeply in love with, and be deeply loved by the same person
- Give people reasons to say nice things about me when I die.
As I spoke these words to the audience, I realized I have achieved the first two of the three, and it’s too soon to know the outcome of the third. I need new life goals.
I spent the past weekend reflecting on what these new life goals should be. I did some deep soul work, and came up with new intentions. They include questions I’m hoping to have the answers to this time next year. I’m not going to write them here. They’re personal.
I started 2018 with a bang. I spent time with some of my closest family, which was a goal for 2018 (there’s a difference between yearly goals and life intentions). Afterwards, I went to my barre class, and the instructor talked about breaking plateaus. That resonated for me. I’ve reached a plateau in my life goals. 2018 will be the year to break through.
I came home from that class ready to write a post for this blog about how to know if you’re stuck in your life goals, and methods to get unstuck. I was on fire.
I forgot to mention, I began knitting a sweater last week. I’m a pretty good knitter, but the pattern I chose, though it builds on skills I’ve gained by making smaller projects, is the most complex pattern I’ve worked with. It’s knit from the bottom up, beginning with the sleeves, which are joined to the body of the sweater before making the yoke. I’ve been working on the first sleeve for several days. It’s over a foot long.
That’s when I noticed it’s too long to accommodate the rest of the rows needed to make the remaining necessary stitch increases. I re-read the pattern. I had misunderstood the increase rows sequence. Now I have to rip out all of the knitting I’ve done, and start over. Arrgh!
I felt defeated, the wind let out of my sails. It’s the first day of 2018, and already I’ve made a mistake!
Then it came to me: That’s how plateaus are broken. You try something new, and you’re not good at it yet, so you make a mistake, maybe more than one. You have to start over, and keep trying until you get it right. That’s how you get unstuck. That’s how progress is made.
I haven’t ripped out the stitches yet. I decided to write this post first. I feel better because I did. I feel motivated to rip out all those hours of knitting, and start over.
2018 is going to be a transformative year.
As I write, there is a man in jail vehemently defending his freedom of speech. He chose to exercise his freedom on public transportation, a Max train, by screaming hate speech at two teenage girls, one African American, the other Muslim. His harassment of the girls so escalated that three men placed themselves between the attacker and the girls. All three men were viciously stabbed, two of them fatally. On the evening news the attacker maniacally justified the stabbings as his right to protect his freedom of speech.
Portland remains traumatized by this act of horrendous violence that made national headlines; an act of savagery that simultaneously documents the very worst, and the very best of our community.
I learned about freedom of speech in the public elementary school of the small town where I grew up. Our teachers taught us to temper our opinions with civility and common sense: “Freedom of speech doesn’t allow you to yell, ‘Fire!’ in a crowded movie theater,” we were instructed. Or as another teacher graphically put it, “Your freedom of speech extends to the end of your nose,” meaning you have the right to say it, but your words may earn you a punch in the face.
My nostalgic elementary school memories are charming, yet they were created during a time of great national unrest. I’m probably as young as an adult can be with a bona fide memory (not one created by archival footage) of the day President John F. Kennedy was assassinated. During the years my teachers were explaining Freedom of Speech to me and my classmates, Dr. Martin Luther King was assassinated, and Robert Kennedy too. On the evening news throughout my elementary school years, we witnessed the Watts Riots, and learned four students at Kent State University were shot to death while protesting the Viet Nam war.
I learned “A punch in the face,” was a euphemism used by my teachers to explain to their students a world they struggled to understand.
Since the Tri Met stabbings, several random, less publicized stabbings have occurred in Portland.
I seldom drive. My chosen mode of travel is on foot. Since the stabbings, I’ve not walked the downtown as much as I used to. I’m not alone in restricting activity to reduce vulnerability to violence.
I’m told Muslim women wearing hajib are avoiding public transportation since the attack on the two girls. For some, public transportation is their only means of travel, and they’ve become isolated in their homes.
A few days ago, the sun rose bright, and warm. I decided to walk to a downtown department store to make a return. A block from the department store, I passed a Tri Met stop. I chose to not over think it.
In the women’s clothing department, I came around the escalator at the same time a Muslim woman wearing a hajib came around from behind a large rack of clothing. Neither of us are tall, which is why we didn’t see each other until we nearly collided. I startled, but she froze in place the way a deer crossing a road at night freezes in the sudden glare of oncoming headlights. Her beautiful, kohl-lined eyes heightened the image. But it was the tension of her body that told me she prepared for verbal attack.
I smiled, and said, “Hello.” The tension melted from her body. She smiled, and nodded. We went on our separate ways.
We were the same: two women venturing out alone, downtown, on a sunny day in the land of the free on 4th of July weekend.
Freedom of Speech, home of the brave, land of the free: This 4th of July I pause to think about what these words mean, and how they apply to my life. They’ve become simultaneously incongruous, and yet familiar.
What is the word for a nostalgia that includes memories of bigotry and hate?
This 4th of July, I honor those who fought for independence, creating America, my home, and who wrote The Constitution to protect our freedoms. I am proud to be an American. I am nostalgic for a country where freedom rings with civility and justice.
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.
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.