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

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.

Self Advocacy – Creating Your Care Plan

Presented by Mindy Grifitth for A Cure In Sight’s Eye Believe Survivorship Seminar.

For this seminar Mindy presented on how to be your own best advocate, as your healthcare starts with you. Watch the video to learn some tips to feel more comfortable sharing your needs with your healthcare team, why you should speak up for yourself and how and why to have a care plan.

Why You Should Move It, Move It

Why You Should Move It, Move It

P

We all know that staying physically active has many benefits for our health such as increased flexibility/balance/muscle strength, controlling weight, regulating blood pressure, digestion, improved mood, thinking, and sleep, just to name a few.

But did you know that getting regular exercise may also:

  • Help you live longer?
  • Ironically, reduce fatigue and increase your energy?
  • Reduce your risk for developing some types of cancers?
  • Reduce the risk of certain cancers recurring?
  • Ease some side effects of cancer treatment?

We have so many gadgets to inform us of what level of activity we are doing down to the minute on a daily basis. We even get “scolded” if we are not moving enough! When these gadgets first came out many thought that was exactly what they were – just gadgets.  Today, many feel these are lifesaving instruments. Use the great technology out there to your advantage and commit to getting fit!

Getting Started
Check in with your doctor for guidance on how to begin an exercise routine that’s right for you. If you have no health restrictions, gradually build up to 150 minutes of moderate physical activity per week (or 75 minutes of vigorous physical activity). Take it slow at first and if you miss a day just try again the next day.

Aim for a combo of cardio and strength training. (You can do strength training with or without weights)

Besides the obvious forms of exercise like walking, running, hiking, biking, swimming, aerobics, activities like dancing, gardening (digging, raking), household chores (vacuuming, mopping, washing windows, sorry!) or actively playing with children can be just as effective.

If you can’t do full 30-minute sessions some days, break it up into 2 or 3 sessions of 10 or 15 minutes each. It all counts!

Make it easy and fun! Change it up and do a variety of activities you enjoy by yourself or with a safely-distanced buddy.

Crankin’ up the tunes while you work will actually make you move faster and with more intensity.

Join us in our 2020 Get Moving for Bag It Fundraiser, Oct. 16-25, for a variety of activities to get you motivated.

 

Learn More and Register Here!

What matters most if…

What matters most if…

What matters most if…

Let’s say the unthinkable happens.
You suddenly become hospitalized due to Covid-19 and are unable to communicate, make decisions for yourself or have a loved one by your side.

Preparation of your advance directives for health care is the best way to give voice to your wishes and what matters most to you. A healthcare power of attorney informs your doctors about your preferences for medical care and could give helpful insights to those you select to speak on your behalf. It’s impossible to account for all the possible scenarios and every potential long-term impact on your health from Covid-19. But even expressing what makes life worth living for you or the quality of life you don’t want to suffer later can guide the decisions made about treatments to provide and when.

If you’ve already put the appropriate documents in place and shared them with the right people, good job – but keep reading if you did that pre-Covid! Now is a good time to pull them out and reread them to make sure you are comfortable with your instructions in light of the pandemic. Do they reflect your treatment preferences no matter the reason for your condition or critical illness, or do you have definite ideas about treatments you do and do not want in the case of Covid? Are any changes needed to the named agents appointed to act on your behalf? Do you need to add back-up trusted agents in the event your appointed spouse/partner or other household members also fall ill?

Whether you need to complete these documents for the first time or an update is due, make this a priority today! Below is more information about where to find resources for your state as well as tools and resources to complete the process.

The Conversation Project

Downloadable life care planning packet for Arizona

Downloadable life care planning packet for Arizona: (Spanish)

AZ End of Life Partnership

Downloadable advance directives for 50 states:

aarp.org/caregiving/financial-legal/free-printable-advance-directives

Caring Info

POLST (portable medical order for emergency medical care)

Once the paperwork is in order, provide copies to the involved people in your life and also have a frank conversation with them about what’s important to you. While it may not be easy to talk about it, having the documents ready and sharing your personal values with them means everyone will feel more prepared and brings a bit of control and peace of mind – just in case the unexpected happens.

Get Moving for Bag It

Calling all Bag It Friends across the country – WE NEED YOU!

As the planning began for the 17th Annual Take a Hike for Bag It and with the ramifications and uncertainties of COVID 19 it became apparent that the format of our annual event would need to be changed. A few things that we needed to keep in mind: how to have a financially successful fundraising event and still keep the integrity of the annual hike that the participants would  love and continue to support. After much research, input from our hike volunteers, past participants, board and staff it was decided that the 17th Annual Take a Hike for Bag It become Get Moving for Bag It.

This year’s event let’s you hike, bike or whatever you like on your own time and on your own turf. 

Bag It  is reaching out to all our loyal friends as we NEED your continuing support. We have created a unique fundraising event as the annual Take a Hike for Bag It in Tucson is on hold this year. We are hoping to have ALL our friends from the West Coast to the East Coast  join us and support this year’s annual fundraising event as it is essential for Bag It to continue to fulfill its mission.

Get Moving to support Bag It’s mission to educate, support & empower those impacted by cancer. 

Your participation helps raise funds to continue to provide the Bag It bag at NO CHARGE to those impacted by cancer. The contents in the bag helps patients and caregivers talk to their healthcare providers, know what questions to ask, and serve as the most important advocate on their healthcare team. Will you help empower the expected 1.8 million new cancer cases to be diagnosed this year in the United States?

**********************************************************************************

It’s simple: Sign up and Get Moving!

Register Today!

Once registered you will have full access to the Get Moving information, daily activities, and be entered into drawings and contests.