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.
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,
Preventcancer.org recommends these seven steps to help prevent cancer.
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!
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! iPhone, Android) 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.
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.
Caregiving Across the Miles
A long-distance caregiver lives an hour or more away from someone who needs care. Your support could take many forms such as connecting by phone, texts, emails and virtual visits, doing research, navigating insurance or finances online, managing the household from afar, coordinating in home care or services, visiting to relieve a primary caregiver, keeping extended family and friends in the communication loop, or even helping with expenses. Even if you can’t be there in person, your role is important and there is much you can do for your loved one no matter where you live.
Whether you are a new caregiver or have been in this role for some time, these suggestions can make life a little easier for everyone:
- Learn about your loved one’s specific cancer type (and/or other diseases), their medications and their treatments.
- Ask your loved one and any other caregiver(s) what you can do to help.
- Learn about your loved one’s specific cancer type (and/or other diseases), their medications and their treatments. This will help you to anticipate what to expect, enable you to communicate knowledgeably with your loved one, other caregivers, and the healthcare team, as well as assist in future decision making. Before hopping on to Dr. Google check out these tips on how to do research safely online and evaluate the credibility of the websites you source. The Resource Center on the Bag it website features a list of resources for every cancer type and any cancer topic.
- Ask your loved one and any other caregiver(s) what you can do to help. Communicating long-distance, even with text and email, is not the same as being there and can be even more challenging. It’s important that conversations are frank and clear. Actively listen to their stated needs and preferences and follow up with questions to be sure you understand. Together, create a checklist of what needs to be done (click here for examples). Be flexible. Keep in mind that your loved one’s condition will change and adaptations will be necessary as time goes by.
- Build a team of caregivers if it does not already exist. Take into account what everyone’s individual strengths, interests and limitations are when coordinating who will do what, from where and when. Your loved one should be a part of this important process, if possible.
- Get organized. Bag It’s My Companion Guidebook is a perfect tool to keep everything in order and in one place. Use it to store medical info, health care and personal contacts, reports/scans/labs, calendar items, insurance info, notes and questions for the doctor, track side effects and symptoms, and much more. The handy forms can be filled in by hand or use the fillable PDF format to print, save and update later, and share electronically with others as you see fit. Find the forms here. Maintaining this information and all the paperwork on an ongoing basis will make this an easy go to reference for caregivers and doctor visits alike.
- Offer to join your loved one’s doctor appointments virtually. The pandemic has greatly expanded the ability for health care systems to easily include caregivers by phone or video conferencing during in-person or virtual office visits.
- Gather information about local resources where your loved one lives. Programs and services that assist with in-home care, meals, medical equipment and aides, transportation and other needs may be available to fill some gaps or ease caregiving responsibilities of a primary caregiver.
- Being a long-distance caregiver brings its own unique challenges, stress and other emotions, particularly when for an extended period of time. Have your own support system in place and connect with people who understand what you are going through. This could be a caregiver support group, online community, a counselor or even a friend who has also been a caregiver.
More tips for Long-Distance Caregivers
- Consider a medical alert system if there is not a caregiver in the home at all times.
- New to caregiving? Consider attending caregiving training available through your local aging agency, AARP or other business in your local community or online. This specialized training can include helpful skills such as first aid, physical care and safety, assisting with activities of daily living, and other ways that you can be an effective caregiver in person or from afar.
- As a caregiver you may be eligible to take unpaid leave from your job to care for a family member under the Family and Medical Leave Act (“FMLA”). Learn about your rights here and check with your employer regarding potential coverage and FMLA policies related to your job.
- Check this list of apps available to help manage many aspects of caregiving.
- Pack a travel bag in advance and prepare your own household in the event you need to leave quickly for a few days to attend your loved one.
Helpful Tips for When You Visit Your Loved One
- Plan your visit to identify what you want to assess and what you hope to accomplish from a practical standpoint, but don’t forget to also set aside dedicated time to enjoy each other’s company. Do things that are fun and relaxing that are not focused on caregiving or a “to do” list. (These hours could be the ideal time to give the primary caregiver a much-needed respite for a few hours or day or two if you can swing it.)
- If possible, accompany your loved one to their in-person doctor appointment. Use the Bag It form My Appointment Summary Log form to note the appointment details and write down the questions to be asked (and answers received).
- During the appointment, get your loved one’s permission to allow the healthcare team to share medical information with you and get the necessary paperwork signed along with a copy for yourself. Exchange your contact info with the health care team and discuss the best method for future communication together.
- Hold a meeting with your family/caregivers. You bring a fresh perspective and may observe things that a primary caregiver does not notice day-to-day. Continue to listen carefully and be aware that other caregivers are also under tremendous pressure so emotions can run high. If you offer suggestions for more help, be specific about the types of support you are proposing. For example, having a home health aide come in each week, hiring help with yard work or other household maintenance, having groceries or prepared meals delivered, or arranging for transportation for medical appointments.
- If not already completed, start the conversations with your loved one and the other appropriate people to have a healthcare power of attorney and a durable power of attorney completed in the event your loved one becomes unable to speak or make decisions for themselves. While these topics can be sensitive and more than one discussion may be needed, executing these documents ensures that your loved one’s wishes will be followed. Advance health care directives are also a tremendous help for the medical team and others potentially making decisions on your loved one’s behalf if needed in the future.
- Take care of yourself during visits to your loved one. Get plenty of rest and set aside some time to recharge so you can be your best self with them. Remember you will not solve all the problems and have all the answers but your support, assistance and presence will no doubt mean a great deal to those you care about.
Additional Caregiving Resources:
Caregiving from a distance
Eldercare locator: Find local caregiving and support resources in your community
ASCO Answers Caregiving booklet
Family Caregiver Alliance Handbook for Long-Distance Caregivers
American Cancer Society Cancer Caregiver Resource Guide
AARP Prepare to Care guide
Family Caregiver Alliance Handbook for Long-Distance Caregivers
State by State Advance Directives: