Two weeks after my college graduation, I was thrilled to land a job working in cancer research at a prestigious cancer center in Cleveland. I was especially excited to be working to provide better access to clinical trials for blood cancer patients since a dear friend of mine is a childhood leukemia survivor. Little did I know as a young and healthy 22-year-old, that the same friend would be shuttling me to and from appointments at the same cancer center after my own cancer diagnosis.
I was initially diagnosed with very early stage breast cancer shortly after my 27th birthday in 2013. I had a recurrence in 2016 and was ultimately diagnosed with metastatic breast cancer in 2017. With no significant family history of breast cancer to report, I was completely stunned. I cannot put into words the misery and anguish I felt after being diagnosed with metastatic disease. It is a feeling I would not wish on my worst enemy and an experience that has forever changed me.
In my current role as a Program Manager at the Cancer Center, I work with the multidisciplinary team of doctors – surgeons, medical and radiation oncologists, pathologists, radiologists and more – who treat breast cancer. I also work with the team that treats sarcoma, a rare bone and soft tissue cancer; and the team that treats gynecologic cancers like ovarian, uterine and cervical cancer. My main objective is to help build and support cohesive teams of clinicians to better streamline care for patients and improve their patient experience.
Throughout my cancer diagnosis and treatment, I have been extremely thankful that I work at the place where I am also being treated. Because of my professional career, I have a very good understanding of cancer and all the medical jargon that surrounds me. I know who to go to when I have questions, and I understand what resources are available to me. I work side-by-side with the people who treat me – not many people get to say that! When I was first diagnosed, my mom traveled from my hometown of Buffalo, NY to attend my doctors’ appointments. She commented how difficult it would have been to find her way if I had not been familiar with how to navigate the Cancer Center’s large campus. In an already difficult and stressful situation, even the smallest advantage can make the biggest difference.
I am acutely aware that my access to healthcare and to health information are only two of the many advantages from which I benefit. In addition to my health and cancer literacy, I am in the “majority” in so many other categories – socioeconomically, racially, financially and more. I am a straight, white, middle-class, well-educated woman. I know I benefit greatly from the circumstances I was simply born into. Most people with metastatic breast cancer do not have the same advantages I do. This is especially true for women of color.
If you are familiar with the Tigerlily Foundation, you are probably very aware of the significant disparities that exist for black breast cancer survivors. American Cancer Society statistics tell us that black women are more likely to be diagnosed with triple negative breast cancer, a more aggressive form of breast cancer. Black women are also diagnosed at a younger age, at a later clinical stage, and are more likely to die from their disease. There are significant barriers to combating these startling statistics. One is the mistrust people of color feel towards our health care system due to past and present discrimination and maltreatment. A breast cancer diagnosis is tough enough, but black women have so many additional challenges to deal with.
So, what can a straight, white, middle-class metastatic breast cancer survivor do to make a difference?
When people learn that I am living with cancer and working at a cancer center, they assume I started my employment there as a result of my diagnosis. When I tell them I was passionate about combating cancer long before I was diagnosed, they often comment on the strange coincidence of it all. I see things differently, however. When something bad happens in my life, I ask myself, “What am I supposed to learn from this?” Why, when I set out to be a child psychologist, am I working in cancer care? I came to the conclusion early on that my current situation is no coincidence or twist of fate. I am where I am today – survivor and caregiver – for a reason, and that reason is to help others.
As a cancer survivor working in oncology, I am uniquely positioned to help others who are battling this awful disease. Through my own diagnosis, I bring deeper insights and compassion to the work I do every day at the Cancer Center. I continue to support other young women who have faced a similar diagnosis. I continue to raise funds for cancer research through my own volunteer work. I advocate for other people who do not have the same advantages I do. Having a purpose for the pain and suffering my family and I have had to go through makes my experience so much more palatable and, simply put, it’s the right thing to do.
Amidst the heightened racial tensions of the last several years, I have often thought, “What can I do to help?” Nothing seemed to fit; nothing was enough. Very often when people do not know what to do, they do nothing, and I was determined to do something. Something is better than nothing. So here is my “something”.
While I have been an advocate for breast cancer survivors for the last 8 years, I have never specifically called out the experience of black women in my advocacy. I know now that I am missing a huge opportunity. Insufficient as it may be, I decided I need to start right where I stand. In my case, that is smack dab in the middle of the cancer world. I have the power as a cancer center employee and program manager of the breast cancer program to be an advocate for women of color in my daily life and work. My experience as a survivor only amplifies my voice, and I need to use that voice to OUR advantage. I need to be intentional about closing the disparity gap. I need to learn more. I need to always ask questions like, “How might this be different for women of color?” or “How can we better represent women of color in this initiative?” I need to make suggestions like, “We should include a woman of color on this” or “Let’s focus this effort or plan this event specifically for women of color.” I need to be a true ally.
As one way to show my commitment, I have also taken the Tigerlily Foundation’s Inclusion Pledge for Black Women that states “[I] pledge to only participate in initiatives – panels, boards, planning committees, programs — that include the experience of black women; and we commit to taking specific actions to dismantle systemic barriers and end disparities for black women in our lifetime.” It saddens me that we need such a pledge, but I have gladly taken it and share my commitment here to hold myself accountable to it.
I am encouraging everyone reading this to not only take the pledge, but to find their “something”. Some white women may feel powerless or, like me, are scared to act because they might say or do the wrong thing. For what it is worth, I give you permission to try; try something. I challenge you to look right where you are standing and change the small corner of your world, because doing something is better than doing nothing.