Ask the Advocates: Sources of Support & Information
Welcome to part three of our series, Ask the Advocates! We hope you will provide your answers in the comments below, too! You can also feel free to post your own questions in the community Q&A section. See Abigail and Emily's responses below.
Where do you turn for information? Support? And how has this affected your journey?
First of all, I don’t identify my life generally or my experiences now with Stage IV metastatic breast cancer as a journey. That word doesn’t feel quite right to me. I prefer to think of this time period where I am adjusting to living with a terminal diagnosis as a season. Just like the season before children or adjusting to having children, there are new priorities, a new language to absorb and new kinds of decisions that often have to be made at the moment.
Secondly, as far as where I get information, that’s a mixed bag for me. It really depends on the type of information and the amount of time I have to digest it.
For treatment options, I rely on peer-reviewed articles and I’ve gotten much better at identifying the best journals to read. I always run the information I find by my current medical team but I’m also not afraid to seek out second opinions. My medical oncologist laughs regularly and remarks that I keep her on her toes more than any other patient. I’ve carefully gone to each of the big cancer centers in Florida to ensure that I’m an established patient able to take advantage of any trials. My current medical team is at the Miami Cancer Institute which has a strategic partnership with Sloan Kettering in New York. These are all things I take seriously and try to be strategic about. I’m eyeing some trials at MD Anderson that are focused on a mutation I have and if I need to add another facility to my list, I will.
How this has impacted my experience
I’ve frankly gotten many more tips and tricks as far as handling various treatments and side effects from other men and women with the same diagnosis than any of my medical providers. I have had some very helpful chemo nurses along the way too but other people who have been through this experience too have been the most helpful. I’ve done my best to pay this forward and be helpful to others, especially the newly diagnosed, whenever I can.
The long and short of my outlook now is an old idea, that no person is an island. John Donne expresses the concept this way: “No man is an island, entire of itself; every man is a piece of the continent, a part of the main.” This applies to my experiences in the following ways:
- I have to ask for help. I cannot do life by myself and I can't assume other people will know what I need.
- I have to acknowledge that when I overdo it and I can't do something, that affects me but it also affects the people around me who are helping me. I have to think of the effect on others, not just me.
- I have to make lists and I have to slow down when I'm making decisions.
- I have to speak up when something doesn't make sense and ask as many questions as I need to in order to understand.
- I have to make sure that all of my caregivers know the same things and know what I need, not just one.
Sources of information and support
One of the most effective tools I have developed since my breast cancer diagnosis is the ability to cast a tremendously wide net to find appropriate information and support. As an attorney, when I was navigating a difficult client or legal question, I would often do this as well, reaching out to as many others as possible to gather their perspectives, insights, and opinions, and then compile that information for my own distillation. Granted, it’s a fairly time-consuming process, but it has afforded me the opportunity to gather a large body of knowledge about my disease, and feel tremendously confident in both my care team and my own management of my symptoms, side effects, and treatment choices. While gathering information and gathering an appropriate support network are very different functions, there is a lot of overlap in the two processes. It is an opportunity to take stock of your needs, identify where and how those needs are currently being met (or not met), and identifying what questions need to be answered, how they should be addressed, and who should be addressing them.
How has this affected your journey?
This has been one of the biggest assets in my life with metastatic breast cancer - I feel like I am not only armed with a wealth of knowledge about so many aspects of life with breast cancer but feel like I can, in turn, be a source of support and information for others. This in itself is very empowering, especially living with a disease like metastatic breast cancer, where so much of your life, treatment plan, and health changes are out of your control. At my core, I am a researcher, and truly enjoy the opportunity to dig deep into a question, whether that question is a logistical one, such as what sorts of childcare options are there, and which fit our needs the best, or something more open-ended, such as the choice between a standard treatment option and a clinical trial. Finding myself in the position to not only critically address many of these questions for myself and my own family, but to provide insights into my thought process, methods, and decisions is tremendously empowering.
Do you have a caregiver or are you a caregiver?