“You have breast cancer.” Those words will forever change the way I see and live my life. I received my initial diagnosis in August 2020, smack in the middle of the COVID-19 pandemic.
Healthcare has forever changed because of COVID-19. I don’t know what a cancer journey before the pandemic looked like. I do know the feelings associated with having no family being allowed during cancer procedures and treatments.
My husband was at the very first appointment, when I received the diagnosis, and then at my last radiation appointment. I also know what it’s like to have your twin sister wait in the car for hours for a second appointment at Mass General Hospital in Boston, Massachusetts.
Boston is located about 90 minutes from my home, and although it is only a few miles, Boston traffic is a well-known stressor and often the end of many New England jokes.
No family members were allowed to experience those initial steps with me, from finding the entrance to the hospital to riding up the elevator and walking down the long corridor with labels of “cancer.” It all hit me like a brick, but with the mask required, I did not even try to cry. I had to be strong.
My Organization Skills
I grew up in Vermont, and my family’s underlying messages were to never give up, follow through, and have a general life plan. As a young adult, I began to discover my planning and organization skills, which I continued to develop in college, and then became a professional in process improvement.
Facing a cancer diagnosis was overwhelming, scary, and alarming. After the initial shock set in, I had to have lengthy emotional processing with my family and friends, quickly. I was ready.
I knew exactly what I was going to do—get organized, and plan as much as possible, the only thing I knew I was good at in those first few days. This contributed to excellent learning perspectives along my journey, personal efficiencies, and eased some aspects of my treatment plan for myself and for my family.
No “Off” Switch
How often do we hear that our work and our personal life are separate? I don’t know about you, but I certainly don’t have an “off” switch in my brain. I try very hard to leave work at work, but a certain aspect of my work is about learning and organizing. Using my professional skill set affected my personal journey and led to positive results in a complex cancer treatment plan.
The physicians, nurses, and other members of my care team came to recognize me as “so organized” and “easily to advocate for yourself.” I came out of my cancer journey mentally stronger, as a result of my organization and planning skills.
I’d like to share with you 4 things I created to plan for and organize my cancer journey, which may be useful for other patients.
1. A Go-To Binder
I created a simple 1-inch binder with color-coding tabs. Each tab is labeled and organized in alphabetical order. The tabs are labeled “diagnosis,” “medical history,” “insurance,” “questions,” “surgery,” and “treatment plan.” I also printed all the relevant information from my electronic health records and organized it all in one page into the binder.
My “chemo brain” was going to need help staying organized. The binder traveled with me to all my appointments. The binder even traveled with me on an ambulance after my first chemotherapy session, when I had many symptoms from the treatment, such as fatigue, vomiting, diarrhea, dehydration, and a rash.
This binder saved many hours for me and for the local hospital where I received emergency care. Because my oncology information was not in the local hospital’s electronic health record, having paper copies of the information in my binder saved a lot of time, questions, and allowed us to make informed decisions. This also helped with my local primary care, dental appointments while receiving radiation, and urgent care visits.
2. The Calendars
I had a paper calendar on the fridge at my house, and our family shared a calendar on our phones for coordination purposes. These 2 calendars worked well. I sent copies of my appointment dates and times for chemotherapy to my sisters for help with travel and care coordination for visits.
When it came to radiation—which continued for 6 weeks, Monday through Friday, 2.5 hours round trip daily—I asked for help on specific days, and put that on my calendar to share with my friends and family who helped with the trips. One of my sisters even made me a huge laminated calendar for the wall. This also provided a sense of relief, because I was able to place a giant “X” on the days of completed radiation.
3. A Facebook Group
I created a Facebook group to provide specific updates on my health. This was a great and efficient tool and saved me many hours of texting and phone calls. I could not keep up with the loving texts I was getting, so having these updates to my group made our communication easier.
It was also a way for me to share feelings, emotions, and recommendations for people going through cancer. I received hundreds of messages from people indicating that they, too, did not know how to help a person with cancer, or what they may be feeling.
I also acknowledged people and their donations toward gas, groceries, and support. I took milestone photos and videos and shared them during the hours I’d be sitting in a chemotherapy chair. People felt connected to me and I to them at a time when I could not receive a hug or share a conversation with a friend.
4. A Wall of Cards
These cards were an “extra” feature that helped me to believe that I could make it through this journey, and reminded me of who I am—strong, kind, resilient, and still myself. It was a great way to share photos, updates, challenges, and what my family needs.
I shared the wall of cards on my Facebook page, and with friends. One of my friends sent me a card almost every day of my treatments. I also wanted my kids to see the love and well-wishes I received. In times of darkness and challenge, the wall of cards (see Photo) was a true source of inspiration.
I highly recommend for everyone receiving complex medical care to get organized and plan ahead. There are many benefits to putting your health information together and being organized during cancer treatments.
During chemotherapy, I worked remotely right from my chemo chair. This allowed me to concentrate on my work in a quiet location and to develop life goals.
As I sat there, receiving the drugs that intend to zap any remaining cancer cells, I spoke at length with my nurses and care team. During those many hours in the chemo chair, I was processing my medical concerns, sharing my stories and my professional role, and had dreams of the future.
The conversations with my care team involved many compliments about my organization, planning, and advanced people skills.
When people tell you what you are good at, listen to them.
As a result of my experience and the encouragement from my friends and nurses, I took the plunge and in December 2021 launched an online site providing health advocacy solutions (www.heatherbarto.com). This site allows me to help people who need assistance taking charge of their healthcare needs or in becoming an advocate for themselves or for a loved one, as well as consulting with people on organizational and planning skills.