Tag Archives: breast cancer survivorship

2019: Days of Miracle and Wonder

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These are the days of miracle and wonder 

-Paul Simon

 

 New Year’s Eve 2018 marked the twentieth anniversary of discovering a lump in my breast that proved to be cancer. So began the days of miracle and wonder that shaped the next year and a half of my life, transforming it in ways I could not have imagined at the time.

The Star collage by Julianna Paradisi 2018

2019 marks the ten year anniversary of publishing my first short stories in an anthology, followed by creating and writing this blog, JParadisiRN.

2019 follows a year of internal transformation. Thankfully, none are as dramatic or terrifying as a cancer diagnosis, surgery, and losing my hair, but they are significant enough to have opened my senses to new perceptions and possibilities as I completed the last year of a twenty-year cycle of personal and professional growth.

A former pediatric intensive nurse who’s transitioned into adult oncology nursing, I’m humbled by my survival. I know all too well some people are born to live only a few hours, days or a handful of years, and that cancer kills without remorse or discrimination the young, the bright, the kind. Others go on to live with chronic illness or metastatic disease. To survive an average lifetime is a miracle and wonder. It comes with a burden, or more rightly, responsibility.

I’ve written before I don’t believe in living a balanced life if balance is defined as To keep or put (something) in a steady position so that it does not fall. I still believe this. However, perceptions gained in 2018 have led me to expand my definition of balance to something more like a glass of world-class Pinot Noir: a thoughtfully crafted, satisfying blend of many parts chosen to complement the whole, and not elements distributed equally as though they are the wedges of a pie.

I don’t have a complete grasp of the concept yet, but I’m working on it.

At the end of cancer treatment, my transformation included selling or giving away much of what I owned, including my car. I sold my house and moved to Portland. I changed jobs. I took art school classes.

A couple of years later, I married my husband David.

I am very happy and comfortable in the life I’ve built during the past twenty years since finding the lump. Cancer turned into a catalyst for extraordinary personal growth. In 2018 it became clear to me that it is time to build on the foundation of that growth, moving beyond my comfort zone into whatever is next in my quest for growth and individuation. This time, the transformation is more of an internal thing, although there’s already been a couple of external changes reflecting the internal ones.

This blog post reflects an internal change too. I’ve written before that I write “To the So-What?” meaning in the past I began a post with a clear idea of how I would end it, and why I wrote it in the first place. Now I’m not sure I still believe the So-What is So Important. I am becoming enamored of process without attachment to outcome.

Let me repeat that last sentence: I am becoming enamored of process without attachment to outcome.

If you are a nurse reading this, you have an inkling of the size the internal changes. After all, what are nurses or health care providers without focus on outcomes?

Artists.

Down The Rabbit Hole Part II

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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.

 

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

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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.

 

 

 

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.

 

 

 

 

Breast Cancer Issues: Physical Activity During Treatment

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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.