Interview with Abigail Johnson; Stage IV Patient Advocate Extraordinaire
Abigail Johnston, Esquire, is a dynamic patient activist and writer on metastatic breast cancer. A lawyer since 2002 in Florida, diagnosed with Stage IV Metastatic Breast Cancer (MBC) in March of 2017, Abigail also finds time to sit on the boards of SurvivingBreastCancer.org, the 305PinkPack.org, serve as the Director of Mentorship for Project Life, serve as a volunteer for many different organizations and has her own non-profit, Connect IV Legal Services. While diligently tackling her volunteer roles, she is also a daughter, wife, and mom to two boys, who were 1 and 3 when she was diagnosed with MBC.
Abigail is everywhere. On her blog, No Half Measures, Living Out Loud, she writes articles on such diverse topics as coping, parenting, living with loss, memories, funerals, medical debt, wisdom, and much, much more. Then there’s the podcasts and webinars!
On Twitter, Abigail has over 6,000 followers, and her tweets, retweets, and likes are posted with compassion, empathy, and informed sharing based on her experiences as a metastatic patient. And, generously, as a supporter of people of all ethnicities and genders who often experience racial and gender inequality. Facebook, Instagram, and likely elsewhere are all platforms Abigail uses to get her message out there.
It was a pleasure to meet up with Abigail at SABCS19 and I put her on my long list of interviewees. Well, the time has come to ask questions which she has generously agreed to answer.
Would you share your treatment regimen to date?
My diagnosis started off a little strange in that we didn’t know that I was Stage IV from the beginning, so I started treatment with Adriamyacin and Cytoxin (aka “AC”), traditionally utilized as an active treatment for an earlier stage treatment. Once we discovered I was Stage IV, with extensive bone mets, I finished the four dose-dense treatments of AC and recovered from surgery to place titanium rods inside both femurs, along with a radical hysterectomy and oophorectomy. Then I started Ibrance and Letrozole. Thankfully, I enjoyed about two years of stability on that first oral treatment line.
My second line was Piqray and Faslodex, which I started in August of 2019. Once the second PET scan showed that I wasn’t getting durable control, we added Kisquali in March of 2020, just as the country was shutting down due to COVID-19. That three-part combination kept me stable until October of 2021 when we switched over to Verzenio, keeping those monthly Faslodex shots.
In January of 2022, my PET scan showed that the cancer had spread to my liver and I had mets in an organ for the first time. Since the biopsies showed that the cancer had mutated to become more aggressive and I had visceral disease for the first time, we decided to seek out more aggressive treatment. In February of 2022, I started Taxotere (IV chemotherapy) and Xeloda (oral chemotherapy). After six rounds of the combination, I had the very first scan showing No Evidence of Active Disease (NEAD) just around the five-year mark since my diagnosis.
Since May of 2022, I’ve been taking just Xeloda and have had a second PET showing NEAD. Crossing fingers and toes and whatever else possible that this response continues for as long as possible.
Once you experience progression of cancer and you start to see how sneaky and smart cancer can be, nothing is ever the same.
You tested positive for a mutation in the ATM gene. How important was this to setting your treatment plan?
Unlike the BRCA germline mutation, there aren’t specific treatments targeting ATM yet. The biggest thing that discovering that inherited mutation did for me personally was to answer the question of why I have this diagnosis since I otherwise have a very low-risk profile. I’m a volunteer with FORCE (Facing Our Risk of Cancer Empowered) and I’m very interested in the ongoing research to understand this mutation not only for my sake but also for my family.
After my diagnosis, we discovered how widespread the mutation is throughout my immediate and wider family. Knowing that my boys have a 50% chance of inheriting the mutation from me, I have even more of an incentive to understand and prepare them just in case.
How on earth do you manage your prolific workload?
Prior to my diagnosis, I could definitely be described as a workaholic. I’d started my own law firm in 2010 primarily because I wanted to try to balance work and children. While I did have more flexibility, having employees and the pressure of your own business can be a lot. Advocacy work is a whole lot more flexible than what I’d become used to, and I’ve been able to apply so many of the principles that I learned as a business owner.
I do want to mention that the advocacy work that I’ve undertaken has given me a sense of purpose and met some deep needs for being useful and doing meaningful work. We all come to MBC (or another serious illness) with all the life experiences that came before the diagnosis. My entire career as a lawyer has always been about meeting the needs of people in dire straits. I’ve been lucky to be able to continue to apply the lessons I’ve learned in the marketplace to advocacy.
Family life must be hectic, but your family adores you so you’re obviously doing a good job. What’s your time management secret?
I wish I had a secret to share. Loving to read and having the ability to assimilate and communicate information in an understandable way has quite literally been my life’s work. These skills have always served me well and advocacy is no different. Having my kiddos start elementary school has also really helped, and I schedule everything around those hours.
One thing that makes advocacy work flexible is that I volunteer and work with other people living with the same disease. When I’ve been going through IV chemo or when I was hospitalized with sepsis in 2022, the understanding and support I received was amazing. Doing good work with people who understand how to extend grace is key to being able to continue advocating while living with an illness that can take a bad turn at any moment.
I know you discuss your disease with your kids, so how are you preparing them for what will eventually become life for them after you’ve passed?
As soon as we became parents, my husband and I decided that we would be as honest as possible with our children at their developmental level. This decision has meant that we often have had to find ways to explain difficult concepts to them, including my diagnosis.
Over the years, we have had to share more since they are more and more aware of the changing treatments, constant doctor appointments, and the side effects of the medication I’m taking. This has led to some emotional conversations, but I’m also seeing that they are growing in empathy and understanding over the years.
I’ve also done a lot of writing letters and other things for them to see/read/experience after I’m gone, so I’m hopeful that is helpful.
What advice would you offer to a newly diagnosed metastatic breast cancer patient?
The biggest thing is to find and connect to someone in the MBC Community as a mentor, formally or informally. While people without MBC can be very supportive and helpful, it is within the community that we really find the support we need. Outside of finding that sounding board, the other thing is not to feel pressure to understand everything about MBC at the beginning; it takes time.
Do you have a safe space where others understand what you are going through?