Scatter my ashes here...

Scatter my ashes here...
scatter my ashes in the desert...

Telling My Story (Not My Running Story)

Stop Medicalizing Cancer Survivorship!

I started graduate school in exercise physiology in 1989. I was an athlete, a distance runner. But it didn’t take long before my history caught up with me, because my bachelor’s degree was in Forestry. I soon got swept away with funding for a research project in natural resources, studying health benefits of leisure. While seeking out faculty to be on my doctoral committee, I’ll never forget the words of one of my professors: “Your ideas have no place in our discipline.”

You see, HE thought that the behavioral sciences had no business mixing with exercise physiology. Needless to say, he wasn’t on MY committee. I graduated with a Ph.D. in recreation in 1994.

After that I taught at a small college in exercise science and health promotion. I loved teaching but the academic environment felt stifling. Instead I started a personal training business working with clients with chronic health conditions. It seemed much more interesting than working in a gym with young healthy people.

My clients told me their doctors had plenty of medications and procedures to recommend but the thing that really made them feel good was exercise. As I learned about my clients’ medications and diseases, I realized I could do a much better job if I had some medical knowledge. I decided to go to nursing school. But there was a problem.

At the time, I was struggling with my own health. I’d been a competitive ultradistance runner for years, but suddenly, I wasn’t performing well and needed 12 to 16 hours of sleep a day. My energy, moods, and weight fluctuated, back and forth, every few months. My doctor offered few solutions: try some antidepressants (only made me not care that I felt like sleeping 16 hours a day), maybe it’s early menopause (at 38?), you’re getting older, it’s normal to slow down (then why were runners in their 50s and 60s kicking my butt?). I couldn’t read a paragraph because by the time I got to the last sentence I forgot what the first sentence said. No way I’d make it through nursing school like that.

It took 5 doctors to get a diagnosis of thyroid disease and undertreating me for two years until I finally found one who understood that what I really wanted was my life back. She was a thyroid cancer survivor, and she knew that it wasn’t one size fits all, that my thyroid labs didn’t tell the whole story just because I tested in the normal range. I wanted to be an energetic, sharp person again. I wanted to run. I wanted to go to nursing school. All she did was tweak my medication and added another one, my brain fog was gone in a week, and within a month I ran a marathon and applied to nursing school. I was back! I worked part time as a CNA on an oncology unit while in school. I loved it.

After nursing school I got my first job in critical care, in a hospital ICU. The week before I was supposed to start, my younger sister was diagnosed with breast cancer. I was able to go out and be with her after her surgery. After 4 years of ICU and my dad being diagnosed with chronic leukemia, I felt oncology was calling me. I took a job in outpatient oncology hospital clinic.
As I gave patients’ chemotherapy infusions, I always wondered what happened to them after they finished treatment. What were their lives like? I started attending support groups in the community to listen. I also did some fundraising for the soon to be built cancer center in the community, and got involved in the advisory committee of community members, where I heard them talk about what they wished they had when they were going through cancer treatment.

What I heard was the same theme I heard from my personal training clients years ago, medicine wasn’t giving them what they needed; even if the cancer was gone, treatment left them with troubling ongoing effects: fatigue, cognitive problems, neuropathy, depression, and fear of recurrence.

I wanted to be involved in the new cancer center, and I told my boss this. She knew of my background, experience, and interest. When the planning began for the survivorship piece, my boss seemed to disappear. I sent emails, phone calls, visited her office, even saw her in person at various functions, where she always seemed to be getting calls on her cell phone. My attempts to catch her went unanswered for months.

I wondered whether I had a future in the organization. I didn’t want to keep giving infusions until I retired, I felt I could make a meaningful contribution with my background.

After a last ditch attempt to reach my boss, finally she sent one of her newly hired people to talk to me.

“We already have enough people involved.”

I knew I had the skills, experience, and desire to make a difference. Somewhere, but not here.

So I left in November 2013 and started a cancer health coaching business, taking individual clients with all types and stages of cancer, using a palliative-inspired approach (relieving symptoms, taking action, and improving quality of life).

I started teaching a hybrid support group/exercise class at a local health club called FIERCE: functional & fit, independent, energized, restored, confident & empowered. They donated the space, I donated my time, and we still offer it for free to any cancer survivor in the community. Instead of sitting around and talking, we move, and learn about different healthy activities and caring for ourselves.

After a while I realized I needed to move beyond just the local community with my message of staying active and improving quality of life in a range of ways that weren’t being addressed by doctors. Even when patients got a survivorship care plan after they finished treatment, it only gave them a summary of their treatment with a schedule of important follow-up visits, followed by a few weak reminders to exercise, eat right, manage stress, and so on, that they could have taken off the Internet. No guidance or support in making active changes in their lives or how to reduce risk of recurrence.

I spent the last year or so writing and developing the materials for Cancer Harbors, my online service that I launched in April 2016. Through educational materials and videoconferencing, a library of instructional exercise videos for cancer survivors, and a discussion forum, people now have a way to get guidance, navigation to the right professionals in their own communities, coaching in behavioral change and reducing risk, and just someone to talk to for support when they need it, even if they live in the middle of nowhere, anywhere.

I haven’t had a paycheck in 2 ½ years, and I work longer hours than I did in hospital shifts, but I can eat, drink and go to the bathroom whenever I need to and even do my work on my phone as I go for walks.

The real gem is that I am happy. I’m making a difference, and people tell me I am. I’m no longer confined within the walls of a box that wastes skills, talents, and energy, and doesn’t truly value professionals with a real dedication to making someone’s day, improving the rest of their life, or just making their last few hours on earth more peaceful and comforting.

Now I can work with people, not diseases in a factory, whom I can help, by restoring control, independence, and quality to their lives regardless of where they are in their lifespan or prognosis. Instead of keeping them as patient-hostages in the clinical setting, they can restore their well-being in the environment of their choice.

There are challenges I still want to meet: how to educate the public so the cancer experience is not as traumatic, from diagnosis through survivorship, both for patients and their loved ones. So they’re not at the mercy of the first doctor they talk to. So they realize they have choices, can get second opinions, and have a better grasp of what matters so they won’t be distracted by misinformation and scams when armchair cancer experts with no medical education crawl out of the woodwork.

I am proud to be a disruptive nurse. I will resist the status quo, I will keep going when the powers that be don’t have the will or guts to innovate in the interest of the patient. I will not be silent. I will never swing my ponytail, or nod obligingly with a fake smile plastered on my face, as big box healthcare wished I would do. I want physicians and other providers to take the time to listen to what I can offer. We’re all busy, but patients’ lives go on. Let’s make them worth living.

Alene Nitzky, Ph.D., RN, OCN, is a certified health coach, cancer exercise trainer, and Founder & CEO of Cancer Harbors™.

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