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At 42,000 US deaths a year, the push to call metastatic breast cancer "chronic" is premature.
The Centers for Disease Control lists breast cancer as a chronic disease. There are times when researchers and physicians also call it a chronic disease. Certainly, I've been told by various editors and friends that metastatic breast cancer is a chronic disease. After all, they argue, there it is listed as such on the CDC Chronic Diseases page.
Here's the newsflash that I would like to share: Living with metastatic breast cancer makes my experience of ongoing treatments a chronic one. But at 54, my actual cancer is not chronic since my life is probably going to be cut short by this disease. Chronic is my chemotherapy-induced peripheral neuropathy, which isn't going to kill me but is a pain to live with. Metastatic breast cancer is this:
Teva Harrison, a talented artist and author who died this week at 42. Anya Silver, a poet and professor who died in August 2018 at 49. Jenny Pagliaro, one half of the country-music duo Roses and Cigarettes, who died in March 2019 at 35. Maryam Mirzakhani, professor and mathematician, who died in July 2017 at 40.
These four are just a taste of the tragedy of metastatic breast cancer. Most women and men who die from the disease do not have obituaries that get into the New York Times or Forbes or that circulate to viral proportions on social media. Most people who die of metastatic breast cancer are mourned and remembered only by the people closest to them. Sometimes, even today, the cause of their deaths may be obscured by words that hide, in an attempt to keep privacy that may or may not have been the wish of the one who died.
I am angry about the deaths of the women named above, and I am angry about the deaths of women who were much closer to me. In late November 2018, my friend Valerie Roybal, a talented visual artist with work collected by the Albuquerque Museum, died at 49 after over seven years of living with metastatic breast cancer. I met Valerie at the 2017 metastatic breast cancer conference held by Living Beyond Breast Cancer. It was there that I also met Valerie's conference roommate, Monica Hendershot, who died at the age of 59 in February 2019 from the same disease. Monica was a counselor in private practice who was saddened to give up her work, which she did just months before her death, but delighted at the opportunity to spend more time with her grandchild.
I am not angry that I got cancer. I know that there are multiple factors (genetics, environment, luck) that I cannot control. When I call what I feel anger (and there are times when it would more accurately be called rage), it is because we do not know enough about this disease to stop people from dying; it is that people with so much to give keep being lost to a disease that hasn't been given the necessary research attention and funds to come close to its so-called chronic nature. Organizations and advocates are trying hard to change that. They raise their voices at conferences and across every media platform.
Sometimes people call these voices "too angry". They seek to find a way to mute them, to make the calls for more research funding for metastatic disease and its treatment go away. For the sake of the people who've died and who will die, I hope the angry voices win out. The day we can call breast cancer “chronic” will be the day none of us have to fear opening up our e-mails or checking into social media and finding yet another breast cancer death of someone we love.