Musings of an Advocate Survivor

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

What Sherri Romanoski is Doing Now?

What Sherri Romanoski is Doing Now?

Sherri Romanoski, Founder of BAG IT, transitioned from the position of Executive Director to a new role of Senior Advisor in April, 2017. This is a blog about what she is doing now with and for BAG IT.

So everyone asks….are you really retired? The answer is a robust “NO!” But I was very ready to slow down, change gears somewhat, enjoy the people in my life more (my five grandchildren, family and friends) and take time for things I really enjoy. This transition took a lot of planning and patience, but it is actually happening! (Look for my next blog on the complex subject of Founders leaving organizations.)

So what does a Senior Advisor do? I get to focus on areas that benefit BAG IT but also tap into my skills acquired over the years working with BAG IT, my classroom teaching, curriculum writing, and grant writing. Who gets to do that? Use all their skills and experience to advance a worthwhile effort? A very happy person!

Grant writing is a technical skill that benefits an organization to bring in much needed revenue as well as raise awareness and effectiveness of programs. Since April, I have been focused on submitting or helping with submissions of 15 grants for both BAG IT and one of its programs, ESCAPE to Thrive Leadership Conference for Cancer Advocates. We are hopeful that many will award funding. Our grants are submitted to foundations, corporations, and partners.

ESCAPE to Thrive Leadership Conference for Cancer Advocates was launched in 2011. It’s an interesting story…BAG IT had been helping USOncology with its Life Beyond Cancer Conference (LBC) for survivors for eight years beginning in 2003. Those of us who developed, organized, and managed the conference had a hope – to someday support survivors who were encouraged to return to their communities from Life Beyond Cancer and fill gaps in cancer care with organizations, programs, and efforts. In essence, become advocates. (The seed for BAG IT was actually planted at this conference in 2001 when my mom and I, both cancer survivors, attended and got truly inspired.) After much deliberation, when the LBC run came to a close, the key people were tired and ready to move on. Except for me. With approval from a very understanding BAG IT Board that was willing to pilot an extremely unique conference, we launched ESCAPE to Thrive. That was seven years ago. I am responsible for its development, conceptual framework, and management with tremendous support and expertise from our amazing BAG IT staff. The topics, attendees, speakers, and schedule changes each year but fundamentally, it supports cancer advocates in the tremendously tough job they do in educating and supporting cancer patients.

ESCAPE to Thrive is a lot of heart-wrenching work on many levels. I love it. I hope I have the energy to keep doing it and we can get enough financial support to continue this supportive program for fellow advocates. It’s our gift to them.

The third and most lovely task I have is to mentor and support our new young leader and Executive Director, Mindy Griffith. She believes so much in our work, is anxious to learn, and shows an intense desire to lead BAG IT to its next level. I have been a teacher in one form or another since 1974. Mentoring Mindy is a joy and I anticipate and expect great things from her….including change!

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