Monday, January 31, 2022

STRIDE Dashboard Launched

Since my diagnosis, I have followed the statistics for those diagnosed with ovarian cancer. When I was initially diagnosed in 2005,  ACS estimated that the number of women diagnosed with ovarian cancer in NJ would be  ~ 700.  But I often wonder if the number has changed since I was initially diagnosed. I also wondered  where women diagnosed with ovarian cancer lived in NJ.  Were women in some counties being diagnosed more frequently than in other counties? What about women diagnosed with cervical cancer or endometrial ( uterine ) cancer? Did their diagnosis vary by county?

I recently received an email from Dr Anita Kinney (Director of the Cancer Health Equity Center of Excellence)  announcing the launch of the STRIDE Interactive Data Dashboard by the Rutgers Cancer Institute of NJ Community Outreach and Engagement Team and the Cancer Health Equity Center of Excellence. 

"Surveillance, Tracking and Reporting through Informed Data Collection and Engagement (STRIDE) is an interactive data and visualization dashboard (public and institution versions) that includes clinical trials enrollment, biospecimen inventory, tumor registry analytic cases, catchment area information related to the cancer burden, behavioral and environmental risk factors, and demographics.

Features include :

"Cancer Surveillance: Incidence and mortality rates on state and county levels. Cancer screening rates and risk factors are also featured on STRIDE.

User Input Customization: Users can easily filter data to create interactive visualizations. 

Interactive Mapping: Interactive maps include census tract level population and environmental data."

To access the public side of the website please visit https://cancercoe.shinyapps.io/STRIDE/

I used the site to find data for cancer of the ovary incidence and mortality rate in NJ and downloaded this graph.

 

 

I invite you to check out STRIDE as well as the NJ Cancer Registry website ( https://www.cancer-rates.info/nj/) for information such as incidence per county in map form. I grabbed a screenshot of the cancer of the ovary Incidence Rates (2000-2018). As you can see some counties have higher incidence rates of cancer of the ovary than others. Similar maps will be available on STRIDE.

 

Then I looked at cancer of the cervix for the same years and you can see how the incidence rates in the counties differ from ovarian cancer.


What measures can we take to reach people to raise awareness and treat those diagnosed in those counties?  What causes those counties to have higher rates? Environmental issues?  Socio-economic issues? 

This data will help researchers target areas of my state where services and education need to be increased. 

Does you state have cancer data sites like this one? 


Dee 

Every Day is a Blessing!

Wednesday, January 5, 2022

Guest Post by Nancy's List - Meet Suleika Jaouad

I have been following Nancy's List for a few years. Nancy is an ovarian cancer survivor and founder of a non-profit to support persons living with cancer called Nancy's List. Her website( https://nancyslist.org/)  includes many valuable resources. She is @NancyNovack on Twitter. I invite you to check out her website and Twitter account.

A recent email from Nancy not only included an introduction to survivor and author Suleika Jaoud (@suleikajaouad) but also one of her exercises.  In her piece Suleika states that she reframes "the concept of New Year’s resolutions by writing my way through a five-part series of lists.  I hope you enjoy the read, lists and writing prompts as much as I do. Enjoy !

Thank you Nancy for allowing me to share this with my followers. 

Dee

Every Day is a Blessing ! 

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From Nancy's List  email: 
I am honored to introduce you to Suleika Jaouad. I befriended Suleika many years ago and have always have been inspired and enlightened by her beautiful writing and most importantly, her soul. I want to share her very moving exercise that she shared today.

But first, a little about this lovely woman ...
Suleika’s career aspirations as a foreign correspondent were cut short when, at age 22, she was diagnosed with leukemia. She began writing her New York Times column “Life, Interrupted” from her hospital room at Sloan-Kettering, and has since become a fierce advocate for those living with illness and enduring life’s many other interruptions.

Suleika's essays have appeared in The New York Times Magazine, The Atlantic, The Guardian, Vogue, and NPR, among other publications. A highly sought-after speaker, her mainstage TED Talk was one of the ten most popular of 2019 and has nearly five million views.

She is the creator of the Isolation Journals, an artist-led community and publishing platform that cultivates creativity and fosters connection in the challenging times of the Covid-19 pandemic. She wishes to help others convert isolation into artistic solitude. Suleika calls it "transforming life-interruptions into creative grist." Over 100,000 people from around the world have joined.

Born in New York City to a Tunisian father and a Swiss mother, Suleika attended The Juilliard School's pre-college program for the double bass. She earned her BA with highest honors from Princeton University and an MFA in writing and literature from Bennington College.

Suleika is the author of the instant New York Times best-selling memoir, Between Two Kingdoms.

Suleika has been cancer-free for many years. But her leukemia has returned and she is likely facing another bone marrow transplant. She is in my heart.

And now, to Suleika ...

Hi friend,
In our household, the New Year is the most spiritually, creatively rich season. Jon and I both have rituals around it. In the days leading up, he always squirrels away in his studio with a sheepskin rug and some water for a period of fasting, and I recommit to my daily practice of breathwork and journaling — shocking, I know!

Right now, amid this newest wave of the pandemic, as I begin my second round of chemo, these practices continue to be a lifeline. This has been a seemingly endless season of difficulty and uncertainty for everyone — and yet, as is always the case, it has also contained so many moments of beauty and joy. Journaling is how I make sense of these contradictions and the countless ambiguities of life. It’s how I come to understand the world and my place in it, how I learn to carry all of it — the hard things as well as the wondrous ones. As for breathwork, it’s what keeps me from caterwauling and rending my garments while waiting in a multi-block covid test line.

At the threshold of a new year, I often find myself ruminating about the things I didn’t get done, what I wish I had accomplished, where I need to improve. It’s the voice of my inner critic, a voice I know all too well. To drown out her chatter, I crack the spine of a new journal and reframe the concept of New Year’s resolutions by writing my way through a five-part series of lists.

I start with an inventory of things that I’m proud of, big or small, to savor and celebrate all that unfolded in the last year.

I move on to a second list—of what I’m yearning for. Often in the process, I uncover desires not yet known.

The third list is a tough one but a cathartic one. I write down all the things that are causing me anxiety, from the most mundane inconveniences to looming existential dreads.

My fourth list is a toolkit of sorts. I reflect on all the hard things I’ve gotten through and jot down the resources, skills, and practices that saw me through and that I can return to and rely on in the new year.

My fifth and final list is my favorite: my wild ideas list. I set a timer for five minutes, and in a completely unedited stream of consciousness, I jot down every wild scheme, every grand plan, every creative idea that comes to mind, no matter how harebrained or unrealistic.

These lists are celebratory, energizing, exorcising, reassuring, and motivating. They quell my inner critic, reminding me that I’ve accomplished so much, that I know what I want, that I can face it all, that I have everything I need, and that I can dream as big as I dare.

Your prompt for the week:
In place of resolutions, journal your way into the New Year with five lists.
What in the last year are you proud of?
What did this year leave you yearning for?
What’s causing you anxiety?
What resources, skills, and practices can you rely on in the coming year?
What are your wildest, most harebrained ideas and dreams?

To know more about Suleika ... check out https://www.theisolationjournals.com/about

Disclaimer ... David and I did this exercise out loud and it was very exciting. Just thought you might be interested … 

With immense love and gratitude and wishes to Suleika for her deep healing,
Nancy

 




 

Sunday, January 2, 2022

A spark...


 

We made it through 2021!  

Every year in January I write a post about aspirations. In last year's (Uncharted Waters ) post I was unsure of what the year and the Covid Pandemic would bring our way. While waiting for the vaccine,  I aspired to travel to Maine, finally visit family and friends I hadn't seen since 2019, work with my dog, create more art and continue to advocate for cancer research. In 2021, I put off that trip to Maine but continued my advocacy work by attending conferences virtually.  I did have two vaccine shots and a booster which made me more comfortable going out with my mask on.

As we begin 2022, we sit in the middle of the Omicron variant spike. So once again we are a bit unsettled as to how meetings and travel will be affected this year. But I am hopeful to do some in-person conferences. 

As for other things - I aspire to paint and sketch more. My Christmas present this year was a drawing desk. I am thrilled to have a dedicated place to work . 


Above the desk now hangs a print of the Disney character Figment. Figment in the Disney World Ride "Journey into Imagination" uses his senses and imagination to do all sorts of things. 


The Ride theme song " One Little Spark" lyrics start off-

One little spark, of inspiration
Is at the heart, of all creation
Right at the start, of everything that's new
One little spark, lights up for you

I hope this print sparks me to look at details and helps me create anew.

Now on to 2022 with all its potential!

Dee

Every Day is a Blessing!