Race and Cancer, Part I
For most of my life, I lived around other WASPS (White Anglo-Saxon Protestants) in the Midwest. We did live in a few other places (Albuquerque and Maryland) but what I remember most is being around other people who looked like, who acted like me, who had a very similar set of values and mores. Part of that was because I was homeschooled and lived in a white Christian bubble. Then, I went to public high school in central Ohio, which was at that time, extremely homogeneously white.
Seen racism first hand
When I went to college at the University of Central Florida (UCF) in Orlando, Florida, my mind was blown. I don't remember how many nationalities and languages were spoken at UCF when I started in 1996, but to this midwestern raised white girl, it was overwhelming. One of my first closest friends in college was a girl from India who was living apart from her family for the first time. I learned so much from her. I studied in Germany one summer and in my class of American students were multiple different nationalities and languages. First hand, I was privy to overt racism towards my classmates.
Law school was another exercise in learning about other cultures since I went to law school in Virginia (the first real southern state I'd ever lived in) and we had a large black student population. For the first time, I learned from my new friends about what it was to live as a black person, and, again, my mind was blown. 9/11 happened when I was in law school and the acts of violence perpetrated against middle eastern men and women happened in close proximity to where I lived, where I went to school.
And then I married a dark-skinned Jamaican and we have two brown-skinned boys. Yet again, I was exposed to something very different, negativity from all sides. I didn't get it. It pisses me off regularly that we get looks and gestures and comments and I have to be focused on watching for the behavior that would affect my children.
Stage 4 metastatic breast cancer statistics
And then, I was diagnosed with stage IV metastatic breast cancer in 2017 and after I'd found my footing a little, I immersed myself in the world of cancer and cancer experiences. Quickly, I saw that the experiences of different nationalities and races were very different from mine. The statistics bear out the stories that my new friends shared, that black women die at a much higher rate and faster white women.1
I decided that I would explore these issues, the different experiences, the challenges and hurdles, and the joys and triumphs of those that access the medical systems in a different way or have different experiences because of their identity or race. My own experiences aren't the same. I notice racism much more because of my husband and my children, but not usually against me personally.
I've set out to interview several people who are of different races about their experiences, the highs and lows, the stand out comments or behaviors, and then perhaps some remedies. I suspect that what I will find is that the healthcare system, which already fails those of us who are white and middle class, fails those who aren't in that box even more. I suspect what I will find is that people of color, people who are different, people who don't fit into a box have to work harder to get good care. I suspect what I will find will infuriate all of you. And it should.
Have you ever changed your treatment regimen because you were experiencing side effects?