In November 2017, I received a diagnosis of metastatic breast cancer (MBC).
Within the same week, my son turned 2 years old, and my husband and I celebrated our fifth wedding anniversary. Plus, we’d just purchased our first house and made the move from the strenuous New York City life into the bucolic New York suburbs.
Prior to my diagnosis, I worked as an elder law attorney in New York City and was an athlete. Throughout college, I was a member of the varsity swim team, and several years later, I completed the New York City Marathon.
I had to quickly learn how to adapt to life with MBC. Over the past two years since my diagnosis, I’ve learned what helps, what doesn’t help, and what’s most important to my care.
Here are some of the tips I store inside my MBC “tool kit.”
I’ve always been a persistent person.
While my husband may call it stubborn, my tenacity, perseverance, and willingness to figure things out myself has always been an asset for me. Whether navigating a complex legal case or an athletic endeavor, I’d always put my head down and pushed through.
But after my MBC diagnosis, I soon realized how detrimental this attitude could be — to me and to my family.
I was primarily a stay-at-home parent for my 2-year-old son at the time, and we didn’t have family nearby. We also didn’t know many people in our new town. We struggled to establish routines, community, and avenues of assistance.
Eventually, we had our parents come stay with us for several weeks in order to help get us on our feet. I was spending multiple days a week at the hospital, undergoing diagnostic tests, and meeting with my care team. I had little bandwidth to spare.
Now, nearly 2 years into my diagnosis, I know that help can come from many different places. When someone offers to set up a meal train, take my son for the afternoon, or drive me to an appointment, I can easily agree to it without feeling weak.
I know that my illness takes a community to navigate, and by accepting help, I’m doing a better job of caring for myself and for my family.
In the weeks following my diagnosis, I struggled to get out of bed. I’d look in the mirror and wonder who the person staring back at me was and what was going to happen to her.
Within days of my diagnosis, I reached out to my primary care doctor to discuss my mental health going into this new life with metastatic cancer.
I live with a history of depression and anxiety, so I knew that maintaining my mental health would be critical to treatment adherence and finding a new normal.
My doctor referred me to a psychiatrist who helps me manage my psychiatric medications. She’s also a resource for medications to manage my side effects, particularly fatigue and insomnia.
My husband and I also each attend support groups. And during the first year after my diagnosis, we met with a therapist as a couple in order to talk through some of the tremendous challenges that we face.
My primary care doctor and psychiatrist are very involved in my care, and I completely trust both of them. It’s imperative to have a care team who listens to you, supports you, and recognizes who you are as a person, not just a patient.
My first oncologist and breast surgeon were often dismissive of my questions and inflexible or indifferent about many of my concerns. After several weeks of this, my husband and I sought out a second opinion at a different hospital.
This hospital reviewed my imaging from the first set of doctors and noticed a number of issues that had been overlooked. This second opinion diagnosed my metastases, which the first hospital had completely ignored.
My current oncologist is a tremendous physician, and I have faith in her courses of treatment. I also know and trust that she, along with all of my doctors, sees me as a person, rather than just a medical record number.
Having a care team that you know will advocate for you and for the care they want you to have should be a crucial piece of anyone’s MBC tool kit.
As important as it is to have a care team that you trust, it’s equally important to recognize your role as an advocate for yourself.
Often, I worried that I was being the “difficult” patient and that I was calling too much or that I had too many questions at my appointments. But my oncologist reassured me that my job was to ask questions and fully understand my treatment, just as her job was to answer those questions so we’d all be on the same page.
It was then that I recognized how important it is to be my own advocate. It made me realize the importance of my care team functioning as a team — not just a healthcare provider speaking at me.
This recognition empowered me, and since then, my team has been able to more appropriately treat my symptoms and side effects, as well as address issues that arise in a quicker, more effective way.
As my disease burden becomes heavier, so does my MBC tool kit. I feel fortunate to still be alive nearly 2 years into my diagnosis, despite significant progression in the last year.
My family and I would be drowning without the support of our community and finding the willingness to ask for and accept help.
My care team, particularly my mental-health care team, is integral to this tool kit. Knowing I have full faith in them eases my burden and allows me to dip my feet back into normal life when and however I can.
Developing my advocacy skills over the last 2 years has been imperative to my quality of care. Just as I trust my care team, I have learned to trust myself. After all, I’m the greatest asset to my care and the most important tool in my MBC tool kit.
Emily passed away earlier this year in 2020. An advocate for the MBC community, we are grateful to have her words so that others may draw strength from her journey.