Musings of an Advocate Survivor

 

Survivorship is such a tenuous concept. Who is a survivor? What’s the measurement stick? Time? Quality of life? Remission? Cancer-free (for the time being)?

Sherri in 2021

The term “survivor” resonates with so many but it just never has felt a right fit to me.  I do feel like I survived something….but it might not be exactly the cancer I was diagnosed with almost 20 years ago. That is still hanging around in forms of neuropathy and other nagging long-term and late-effect issues. I still get the heebie jeebies when I go for screening. Lots of self-talk. That doesn’t sound like a true, viable survivor attitude in my head.

What I did survive was learning how to do something extremely difficult and challenging and come out on the other side. Some days are better than others, but it IS on the other side. I survived telling my teenage sons I had cancer when I could barely get the stupid word out. I survived all those disappointing non-reactions and reactions from family, friends and colleagues. I survived my husband growing a beard for some odd reason when I was going bald. No justice in that! I survived throwing up in the chemo room (at lunch time of course – amazing how quickly people can tuck away a sandwich!) I survived the health care system that wasn’t exactly all that helpful on the social/emotional side of things. I survived realizing that my life was not eternal.

Looking for the Humor

And surviving cancer is not without humor.  Telling my class of kindergartners and parents that I had cancer was a challenge, especially showing up with 1” hair (a different color of course) sticking up all over my head. And no eyebrows. That I nearly did not survive. I never learned the trick of eyebrow liner. Always ended up with these winging designs that sent me into fits of laughter. I kept telling the kiddos that yes, it really was me. I got a call from the school office after I made my first classroom visit to come “pick up a personal item.” Turned out to be my new breast prosthesis that apparently I did not have the correct knack of using. It had fallen out of my shirt and onto the classroom floor. The kindergarteners were playing Frisbee with it across the room when the principal came in. Took him awhile to figure out just what it was. He had the substitute place it discreetly in a brown bag and take to the front office for “pick up.” I did survive the initial humiliation and then broke out in huge chuckles.

Taking a Leap of Faith

I survived the life-changing challenges of starting a cancer non-profit while continuing to teach. I had absolutely no business experience, just a passion to help educate and make things easier for others. I survived asking for LOTS of help which was not in my comfort zone. Today, almost twenty years later, we have a new executive director leading the way. I am blessed to still be involved in a meaningful way. Still surviving.

Surviving is not without its disappointments. With this work, I have not completely survived feeling so incredibly guilty around others with cancer that have metastatic disease and/or going through cancer treatment for chronic disease….no end in sight.  I still struggle when fellow cancer advocates with chronic disease disregard my completed, past treatment thinking I can’t comprehend their chronic situation. That hurts. I don’t understand fully, but I really, really try.

Inspiring Other Advocates

How much of a challenge is it for someone surviving cancer to become an advocate for others in the same space? Tremendous! So I founded an annual leadership conference ten years ago for cancer advocates helping others with all types of cancer in all kinds of capacities (Escape to THRIVE). These advocates are filling gaps in cancer care all over the country. All of them not only surviving but taking that giant leap into helping others through all this. I hesitate to call it a journey…that’s so cliché these days but it is a voyage. We are all travelers in that cancer space. The courage of all these people that have CHOSEN to help others despite the constant reminder of their own cancer! They have taken on the job as advocate and guide. It takes such bravery as they are reminded almost daily of their own experiences. I get such extreme fulfillment from encouraging advocates to keep up their incredibly valuable work and stay well along the way. That’s the tricky part. If you want to keep surviving, you have to be aware of what you are asking the self to do.

Surviving and Moving Forward

I work hard at surviving…meditate as often as I can, sustained exercise like walking, swimming, hiking – some with friends and some solo. I recently learned the term “outgoing introvert.” Sounds like survival to me! I try to say “Enough!” when I need to and remind myself “I am Enough” when I need to.

So in the end, I consider myself not a survivor but surviving…the continual path of struggle and triumph, ease and fear, sadness and humor, hesitation and courage….surviving life, not just cancer.

 

Sherri and her family supporting Bag It

Q&A with author Judy Pearson

 

Judy Pearson (who writes under Judith L. Pearson) is a published biographer who was diagnosed with Triple Negative Breast Cancer in 2011. Her quest for survivorship information eventually led her to recently publish From Shadows to Life: A Biography of the Cancer Survivorship Movement.

Judy Pearson

How did you first become interested in the cancer survivorship movement?

I founded A 2nd Act, a survivorship nonprofit, in 2016. Through it, I was introduced to Susie Leigh, one of the founders of the survivorship movement. That random introduction opened the door to the material that became this book.

Fifty years ago, President Richard Nixon signed the National Cancer Act. What impact did it have on the disease?

Prior to the 1970s, only 50% of those diagnosed with cancer survived their disease. And because of the fear that cancer was contagious, survivors lived as pariahs. President Nixon’s motivation for signing it and declaring war on cancer was reelection.

Unprecedented amounts of money were made available for research (and a cure helped) and won him a second term. But no one ever considered what life would be like for the increasing number of individuals who would survive the disease.

Much of your book is about the creation of the National Coalition for Cancer Survivorship (NCCS). What strides did it make in changing our country’s view of people who had been diagnosed with cancer?

First and foremost, the NCCS founders created a definition for survivorship. It begins at diagnosis, because that’s when someone begins surviving the disease, and it continues through the balance of life.

Remarkably, until nearly the turn of the 21st century, survivors were discriminated against on all fronts. They could lose their jobs and their insurance for disclosing a cancer diagnosis. NCCS’s early focus was on combatting this discrimination, from the halls of Congress to the bridge clubs and golf courses of small-town America.

They fought to improve healthcare, during and after cancer treatment, helping with the troubling longterm effects. And, like the canaries in the coal mine, all of the survivors’ experiences have helped inform current treatment modalities. Doctors have learned that less is often more, and that quality of life far outweighs quantity of life.

What work still needs to be done in the area of cancer survivorship?

When we’re diagnosed, we spend a period of time in a frenetic stage of diagnostics and treatment. But hopefully, that’s just a small blip on the timeline of one’s life. True, cancer doesn’t end when treatment does.

But there’s healing in helping. The survivorship movement was based on the veterans guiding the rookies. Advocating for ourselves and others will power the movement forward and benefit us. We are now the movement: survivors, caregivers, and medical professionals. So let’s get moving!

 

Do you want to hear more about Judy’s cancer experience and the history of survivorship? Join us on Sunday, June 6 as she helps Bag It celebrate National Cancer Survivors Day® with a virtual conversation. You can join the virtual presentation on Facebook or register to join the Zoom conversation.

Learn more about the event

 

Bag It as a Roadmap

Bag It as a Roadmap

Bag It. Guiding one through cancer.

So, it’s National Read a Roadmap week, and I love a bizarre holiday that connects to many things I love and makes me smile. First, I recall being on a road trip a few years ago, and yes we had GPS on our phones and were using that, when we were trying to find maps of the area we were in just because (okay maybe I wanted to use them later to scrapbook the adventure). At the 3rd gas station we found one, it was dated and covered in dust and the employees thought my friend was crazy for wanting one but we were thrilled!

Then a friend was visiting me and in the side panel of my car I have a few maps, because you never know when you might need one. She found this hilarious and took a picture of it to post on social media asking people if they even knew what they were – she couldn’t believe that I had them in my car. (FYI: I have used them from time to time.)

Now I love technology and frequently use digital maps, but it’s always good to have a back-up plan as we know that technology doesn’t work everywhere or your might not have your phone charged or maybe you just appreciate having things in a printed format. Print makes things easier to share and more readily available (but I encourage you to order those maps in advance of your next trip).

How does reading a map and my random stories (that made me smile with the memories) connect to cancer and Bag It?

Reading a roadmap takes some practice, just like understanding cancer. The Bag It bag works as a guide to help those impacted by cancer understand more about their diagnosis and cope with the bumps along the way. When you receive a cancer diagnosis you don’t get the map (digital or print) to go with it.  You don’t know the vocabulary, the questions to ask, which treatment to take, or which exit has a support network. You need something to help familiarize you with this experience. Your healthcare team is one guide and a Bag It bag is another valuable guide.

The take-everywhere binder (yep, even on that road trip) helps organize appointments and records (similar to your brochures and itineraries). The booklets provide coping tips, support information, reliable cancer information and questions to ask. It’s all in the bag! You won’t feel lost during or after treatment with Bag It as your guide.

 

Bag It wants to ensure anyone who wants or needs a bag has them available to them. You can order one as a gift for someone when they are diagnosed with cancer to help them cope or you can order/request one for yourself. They are a doctor-recommended resource for anyone with any type of cancer.

If you don’t currently know anyone who could benefit consider participating in our Spring 2021 Fundraiser – Gift a Bag It Bag. With a $41 contribution you can help provide a source of comfort and the printed navigation tools to help a patient throughout their cancer treatment and beyond.

World Cancer Day

World Cancer Day

February is a busy month! We honor love, Martin Luther King Jr., Black history, and even our American presidents, but did you know that World Cancer Day also falls in February? The Union for International Cancer Control (UICC) leads the charge in urging everyone to take steps to ensure that preventable cancer deaths are reduced and that there is increased access to life-saving treatments for all patients, “no matter who you are or where you live”. Each year, the UICC establishes a theme for their initiative to shape the many activities and events that kick off around the world each February. This year, the theme is “I Am and I Will” – a call to action to commit and act on steps to get screened and share knowledge in hopes of reducing the number of cancer-related deaths and noncommunicable diseases by one third by 2030 (that’s only 9 years away, so let’s get to it!)

Bag It is aligned with the UICC by providing resources to educate and support patients through their healthcare plan, increasing access to life-saving information regardless of one’s ethnicity or socio-economic background. Bag It provides the tools you need to help you feel more comfortable and confident in speaking up for yourself to ensure the best quality of life with cancer. The contents in the bag are designed to help you and your caregiver(s) cope with the diagnosis, get yourself organized and better understand the language of cancer. 

February is cancer prevention month, and we encourage you to think about ways that you can help yourself and others prevent cancer. It’s the perfect time to schedule appointments for you and your loved ones because adhering to the recommended screenings for breast, cervical, colorectal (colon) and lung cancers can lead to early stage diagnosis, which increases the likelihood of treatment working. 

What action will you take as we kick off World Cancer Day? Take the 21-Day challenge to learn more about cancer and how to reduce your cancer risks. Some suggestions:

As part of my campaign I participated in the World Cancer Day 21-Day Challenge which was informative and easy and I wrote this blog: I will schedule my mammogram (and a colonoscopy this year) and encourage people to schedule their appointments,  and I will work to ensure that everyone diagnosed with cancer receives a Bag It bag to help them cope with their diagnosis and feel comfortable and confident speaking up to ensure they are living their best life with cancer. 

Sending positive vibes your way,
Mindy

Preventcancer.org recommends these seven steps to help prevent cancer.

Unpacking Bag It

Unpacking Bag It

See how we impact the cancer community

Tune in virtually from the comfort of your home to hear Bag It updates!

  • The faces behind Bag It
  • Achievements and highlights from 2020
  • Our goals for 2021
  • Honoring supporters of Bag It
  • All attendees will be entered into a drawing

WHEN: Wednesday, February 24 @ 4:30pm MST (6:30pm EST) for this free event

Watch Live on Facebook (no account required) as Zoom registration is full!

Watch Live on Facebook!

 

 

 

Join Us in Welcoming a Happier New Year!

Join Us in Welcoming a Happier New Year!

Thankfully, 2020 is now behind us. There’s hope for 2021, a new year we are all welcoming.

The typical New Year’s resolutions to eat healthier, exercise more, spend less, and the like, just don’t seem to cut it this year. Consider instead some novel intentions to get through the next few months, with an eye on your dreams for post-pandemic life.

Last year was a tough year of loss for many of us. As we start 2021 and work to move forward we propose waking each day with the intention of “doing good”. Do good for yourself. Do good for your family. Do good for others.

If self-care was not on your radar last year, let’s get it on there now. Research shows that one of the best ways to boost your spirit and enhance your health is physical exercise.

Be of service (or a source of sunshine!) to others. Pick up the phone, send a note, practice random acts of kindness, or volunteer. Find a way to give back in a way that is sincere and meaningful to you. Besides improving lives and/or the planet research shows that our actions also benefit our own minds, bodies, and souls, helping to sustain us during these times.

Take time to imagine a new chapter of your life after the pandemic. What do you want it to look like? What’s important to you? How do you want to “do good” for others? Life is forever changed – did your goals?

Something fun and quite powerful to create is a vision board. This digital (there’s an app for that! iPhoneAndroid) or physical reflection (think arts & crafts collage) using photos, images, words and phrases expresses the life you want to live. Make it yours and keep your vision board in your line of sight to look at it each day. It keeps the vibes humming so your aspirations don’t get lost along the way. It also helps you actually achieve them. How are you going to “do good” this year (or month – baby steps)?

Dream Big and Do Good in 2021.