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

Q&A with author Judy Pearson

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

 

Grateful to our Oncologist

Grateful to our Oncologist

Author: Jenna Frinfrock

When Bag It announced the creation of the virtual Tribute Garden this past spring, I knew I needed to show my support by paying tribute not only to my dad, but also to his oncologist. In 2009 my father was diagnosed with advanced stage-four multiple myeloma. It was a terrifying diagnosis, followed by weeks of radiation treatments, months of chemotherapy medications, and a final successful stem cell transplant. Through it all, my dad had the good fortune of being a patient of Dr. Michael Boxer’s at Arizona Oncology. Not only did Dr. Boxer patiently answer all of our questions, he took the time to know us personally and encourage my dad throughout his treatments in the years following his original diagnosis. 

I truly cannot imagine what we would have done without the reassuring kindness and medical expertise that Dr. Boxer offered at every visit. Over the course of the last ten years, Dr. Boxer was instrumental in allowing my dad to beat back his cancer into remission and enjoy years of family gatherings. Because of Dr. Boxer’s care, my dad was able to attend family BBQs, celebrate holiday dinners and enjoy weekly zoo trips with his four grandchildren. 

We all know that familiar adage, “it takes a village to raise a child.” I believe the same can be said when it comes to supporting someone with cancer. I will forever be grateful for the role that Dr. Boxer played in “our village” as he oversaw my dad’s care and treatment for ten years. It was a privilege for me to submit a tribute on his behalf when he retired from Arizona Oncology in June of 2020 after a very prestigious and inspiring career. 

Check out the Virtual Tribute Garden here. It’s a place where you can recognize those touched by cancer.

It’s a wonderful time to show your thanks to a medical provider, caregiver or friend.

We Appreciate Our Volunteers

We Appreciate Our Volunteers

Bag It Volunteers

Volunteers are the heart and soul of Bag It’s team. Our volunteers include cancer survivors, their families, their friends, and a number of others in the community who have big hearts and a willingness to support individuals diagnosed with cancer.

We’ve highlighted below a few of our fabulous volunteers.

Anne
Believing in the Bag It mission was the main reason Anne joined Bag It in 2004. From helping with miscellaneous office jobs, mini projects, inventory, taking on the role of the hike registration coordinator, a Bag It Ambassador at community events, and helping Bag It spread their awesome work in the community, we can honestly say she has done it ALL – Anne has given so unselfishly of her time and talents to us which we greatly appreciate! While volunteering her time through the years, she can’t name just one favorite experience although she has made strong friendships with staff and others that are also involved with Bag It and those friendships have been life changing!

THANK YOU ANNE FOR ALL THE TIME YOU HAVE GIVEN!
Aunt B
Aunt B started with Bag It in 2019 and already has donated over 50 chemo caps! She chose to give her time to Bag It because she believed her knitting talent was given to her in order for her to use it to bless others. Knitting and crocheting caps for Bag It to send out with the bags during the winter months allows her to volunteer her time when it is convenient for her. Her favorite volunteer experience has been seeing the faces of the various staff members light up when they look through the chemo caps that she has made.  Since creating various hats of colors and patterns Aunt B has created her own original pattern called the Peppermint Twist – you guessed it – it looks just like candy!

THANK YOU AUNT B FOR SHARING YOUR TALENTS!
Donn & Andy
Back in 2016 Andy & Donn reached out to Bag It to let us know what an important part we were in Andy’s cancer journey and inquired how they could give back part of what the Bag It bag gave to them. They attended the 2016 Take a Hike for Bag It and have been very busy helping Bag It ever since! They have enjoyed getting to know other volunteers and helping newly diagnosed scared patients who are looking for help. They have been willing to share their story and explain to others how they used the Bag It bag. Knowing that they can help others, see the little bit of apprehension and fear leave them and the comfort when they realize they are not alone in what they are facing has been a wonderful gift to them, Bag It, and many others.

THANK YOU ANDY & DONN FOR YOUR WILLINGNESS TO GIVE BACK!
Joan
Joan doesn’t recall when she actually started volunteering but believes it was back at the 2012 Take a Hike for Bag It, however she does recall she chose Bag It – because it is a worthwhile cause and she has lost loved ones to cancer. Volunteering for the hike and working with the registration team has been her number one volunteering event. Joan has worked as a hospice nurse and understands the impact Bag It has  to patients and family members. She believes in giving to the community and helping others in need and Bag It has been the beneficiary of that!

THANK YOU JOAN FOR BELIEVING IN BAG IT!
Michelle
Like many of us when a close friend, co worker or family member asks for your help – you are eager to lend a helping hand. So for Michelle it all began back in 2016 – when a friend asked and she said yes! While Michelle has been part of the Registration team at the Take A Hike for Bag It she has been willing to help with other miscellaneous projects. She likes all aspects of giving her time to Bag It and believes her time volunteering has made her a better person.

THANK YOU MICHELLE FOR SAYING YES!
Natalie
Natalie has been a consistent hike volunteer since 2014 – well actually that is her best guess – funny how time flies when you are helping others!  She has continued helping Bag It because she understands that it is a great cause and provides an invaluable service for those impacted by cancer. Trail sitting has been her main focus during the hike although a few years back she began taking photos of the hikers and WOW- has she captured some great photos of our hikers with the scenic mountain backdrop. Natalie loves knowing that giving a small amount of her time can help a lot of people.

THANK YOU NATALIE FOR YOUR COMMITMENT TO TAKE A HIKE FOR BAG IT!
Sandra
One never knows where a parent/teacher friendship will lead you…for Sandra that is where it all began. Back in 2003 Sandra began volunteering with Bag It to help out her daughter’s teacher. Sandra was one of the first group of volunteers to assemble the first version of the Bag It bag in Sherri’s home. Fast forward and she still is actively involved because it has been extremely rewarding knowing how many people Bag It has helped. She has given her time with Bag It by doing many projects however, one of her favorites is when she volunteers at a health fair. This gives her the opportunity to meet so many people, and hear their stories. She finds it so rewarding to be able to tell them about the Bag It binder or listen to how they are already using it. Sandra states-I think volunteering is so important. It makes me feel like I am making a difference in someone else’s life, not just mine. I love volunteering for Bag It. It is my passion, and I hope to continue to do so for many more years.

THANK YOU SANDRA FOR YOUR CONTINUING SUPPORT!
Stan & Heather
Stan and Heather joined the Phoenix group of volunteers back in 2015, they became involved because they understood what a significant resource Bag It was for empowering folks to participate in their treatment. We are very appreciative of their willingness to help share Bag It as it allows us to attend many more Phoenix health & wellness fairs and other opportunities where we would not be able to send a staff member. They have met many cancer survivors, and many Bag It users who have shared many praises of the bag. Stan and Heather do a lot of volunteer work and feel volunteering has enriched their lifestyle.

THANK YOU STAN & HEATHER FOR SHARING BAG IT IN PHOENIX!

Uncharted Times

Uncharted Times

Happy April – March was certainly a bit of a lion (no matter what the saying means) – she roared for us. These are uncharted times for all of us. Those with cancer and other immunocompromised health issues are weighing heavily on my mind, but I also know you are resilient and have the opportunity to show the rest of us how you do it every day! 

A huge thank you and show of appreciation for all of those in healthcare who are continuing to provide services to those with cancer and all of those in our communities – YOU ARE AMAZING and we appreciate the sacrifices you are making for others. 

The Bag It team wants you all to know that we are thinking of you. There are lots of resources out there so please check out our coronavirus page to help support and update those of you impacted by cancer. And please feel free to share other resources with us. We are all working remotely and continuing to fulfill our mission of educating, supporting and empowering everyone impacted by cancer.

Bag It bags continue to be shipped out. The tools provided by Bag It are helpful for those with cancer and other diseases, or if you are experiencing COVID-19 symptoms. Print out a log or blank calendar page and track what is happening. I’m using the calendar as a quick journal so when I look back and scrapbook these days of quarantine I can remember the positive moments during this time. 

We are all embracing new challenges each day (working from home, teaching our children, physical distancing, and more) so we hope you are able to find something positive each day from this situation. Stay physically active, eat well, wash your hands, distance yourself physically, but cherish the zoom calls, phone calls or letter writing options to stay connected or reconnect with friends, family and colleagues. It’s important to connect with others and keep your spirits up. 

If you need anything – a chat, a card, a Bag It bag – let us know as we want to support you today and everyday. In addition, although Bag It does not provide financial assistance there are many programs out there that do and we have many of them listed on our resource page so check them out. Also, many pharmaceutical companies have resources to help with your care or medication so check out their websites.

 

Stay safe, stay healthy, be kind, be grateful!

Ingrid Jacobs’ Journey With The Bag It Bag

Ingrid Jacobs’ Journey With The Bag It Bag

By Ingrid Jacobs

In February 2010, I picked up my Bag It bag at the Resource Center. I was still in shock with my colon cancer diagnosis and was a little dismissive of this bag and its contents.

When I had some quiet time, I looked through it and sorted out those things that directly affected me. By this time I had accumulated a number of providers’ business cards and other information pamphlets that I had in a pile. I also had copies from various doctors of my personal information. This unorganized collection prompted me to look at the binder more closely. Maybe it had something to offer.

The first thing I noticed in the binder was the clear plastic 10 pocket sheet that is intended for business cards. Yeah, I had plenty of those to fill the front and back of almost every pocket. That stayed right up front in my version of the binder. I often wished that I had a couple of those.

There was the encouraging letter from Sherri Romanoski, the founder of Bag It who had had cancer several years earlier. I think that I appreciate her desire to help more now then when I read her letter back in 2010. There were so many things going through my head at the time of my diagnosis and treatment. There were days I felt crappy. There were days I felt pretty good. I was scared and confused, but through it all, I had an extremely strong determination that kept me focused on what I needed to do. I also had the unwavering support of my daughter, her boyfriend, my 2 cats and a dog, a few cousins, and quite a few friends.

The various tabs in the binder caught my attention: Personal Information, Notes/Log/Calendar, Reports/Scans, Labs, and After Treatment. I had something for just about every tab. Hmmmm. . . not half bad. Somebody had put some real thought into this goody binder. I soon found myself putting papers behind the corresponding tabs. Then, I started to personalize it to fit my needs. I created my own tabs. Now I have my dated Chemo Logs and my Post-Chemo Logs. In between my chemo sessions I kept a log of what I was noticing, what I was doing to help myself, and questions I wanted to ask. Every two weeks, I took a copy of this log to my doctor to put into my file. She said that it was very helpful for her to read about these things because it actually helped her with my treatment plan.

Eventually, my original binder was bursting at the seams. I bought a second binder and created my own matching covers for both binders. I labeled them Arizona Oncology Logs and Labs #1 and #2. I know . . . clever and original. (giggle)

From my doctor, I learned that diet (including vitamins and supplements) was very important for more positive treatment results. I created a 3rd binder with corresponding information.  That’s a whole other part of the continuing saga of me taking better charge of my health.

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