Don’t Pink for Me: October, breast cancer, and me

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October is breast cancer awareness month, a cause I support. My mom survived breast cancer round #1 in 1987 but it returned in 1995/96, and she died in August of 96. I lost my mom when I was 22, barely out of college, and way before anyone should lose a parent.

A note about the title – I’ll address this later in my post. “Don’t Pink for Me” comes from a campaign by the Breast Cancer Action organization, and I have more information about them below.

Over the past few years, I’ve been parsing my relationship to health care and the system of “healthcare” in the United States. I’ve realized a number of things about myself which have been painful to admit out loud, and scary to put on paper. Self-reflection is good.

For example, I’ve flat-out assumed that 1) I will develop cancer and likely die from it, unless the heart disease from my dad’s side of the family gets me first; 2) cancer is horrific and treatment regimens are still pretty awful with debilitating side effects; 3) American patients must do most of their own legwork and self-advocacy; 4) insurance companies are a blight and the healthcare payment / billing / insurance system that drives US healthcare is a dystopian, greed-soaked nightmare. Oh, and 5) fat people like me get far worse care, because doctors usually assume any given symptom is there because of obesity, and that “losing weight, eat better, exercise more” is the single answer to everything.

Poverty and Health

Why am I so pessimistic about my own health (#1, #2, and #5)? It’s hard to unlearn a lifetime of negativity about one’s ability to control health circumstances.

I grew up “working poor” – we had a house, we had food (though it wasn’t always high-quality, because our budget was so tight), and we had many elements of American lifestyle thanks to my mom’s full-time job. But my parents were devastated financially by my dad’s disability starting in 1983, and they were caught in the 1980s/1990s dismantling of the social safety net kicked off under Reagan just as they were heading toward their 50s and 60s and eventual “retirement” (which, honestly, neither of them ever got to experience).

Poverty finance is a different world. If you want a quick primer, head to Reddit’s community r/povertyfinance and skim the posts. You’ll quickly realize (if you weren’t raised below middle class) that poor(er) folks must make daily decisions using a different matrix. I’ve learned that most people screaming in American civic discourse about welfare queens (a racist term), “lazy poor people,” and ending unemployment benefits to “force people back to work” are often unaware of how daily poverty closes off options and makes everything so much more expensive.

I think I’ve written about my family’s grocery budget elsewhere on here. An inflation calculator suggests that the $25 a week my dad would spend on groceries (because that’s all we had) equals about $58 dollars in 2021. I want you to imagine running through Publix to feed a family of 3 for a week, including bagged lunches for 2 family members (me and my mom) plus breakfast basics and actual supper, and keeping that bill below $75 every week, without fail or . I challenge you to do it. And my family did not get food stamp support – my mom’s salary was too high. The financial distress for my parents stemmed directly from how they earned too much to quality yet too little to actually survive once my dad was disabled.

By the way, when I’ve worked with families using EBT/SNAP/”food stamps” to survive, they often receive barely that much to survive on (x4, since it’s monthly). Many families on food stamps are running out of food by the 20th of the month. Stop cutting food stamp benefits! And school lunches should be free for all. I digress…

The money, access, and resources simply are not in place to follow a doctor’s mantra to eat right or get exercise when you are poor. You aren’t eating vegetables from a farmer’s market (though we did have a backyard garden, and it provided great tomatoes, lettuce, carrots, and peppers). We ate salad a lot – which ain’t bad – and my dad cooked for our family every single day, usually starting from the holy trinity of garlic / onion / celery and progressing into chicken cacciatore (recipe), minestrone (in the winter, cooked on the wood stove), or anything he could make in our convection microwave oven or electric wok.

We didn’t own an actual stove – I never cooked on a range until I was married. Truth!

Healthcare access? That was a privilege. I remember going to the dentist for my first cleaning when I was 13, because my mom’s company had finally added dental coverage as a benefit. Amazingly, no cavities – but wow, that was a hell of a dental cleaning.

My relationship with healthcare and food is deeply complicated by my parents’ childhood experiences with true poverty and their adult position as working class folks who could not achieve the American dream of owning a house, working a good job, and providing for themselves and me in the way that had been promised to Americans during the 20th century. While a lot of the (good) writing lately on the failure of the American dream has highlighted the dismantling of the social safety net by Republicans since Reagan (and starting under Nixon, honestly), my parents were already living in the result by the late 80s.

Cancer is bad, but Aetna is definitely worse

Going back to my opening list of assumptions, I know #3 and #4 are true. that both American health care and the American for-profit insurance system are an absolute nightmare. If anything, it’s far worse now that 30 years of stripping health care for the sake of shareholder profits has decimated our systems.

Seared into my memory from the 80s and 90s: stacks of bills around our house, with my mom’s handwriting scribbled on them noting dates and times she called to fight an incorrect bill or an outrageous charge. She was fighting with two separate insurance companies (Aetna and BCBS), since back then HMOs were kind of new, and she and my father were covered by different insurance companies through each of their workplaces, individually. Yet both companies at the time offered reduced spousal coverage as a “perk.” Of course, it was a disaster instead, as neither company wanted to pay for anything or uphold their supplemental coverage once they knew the other existed.

My mom fought cancer, but she especially had to fight the entire behemoth of late-stage capitalism in America and its unholy alliance of for-profit health insurance and care providers. Anytime the Aetna commercial came on with its cheery jingle, my parents would yell a correction to the television: “Aetna, I’m sorry I met ya!”

My body, mom’s cancer, and me

I’ve realized that mom’s journey through cancer was …. awful at points, not terrible sometimes, and pretty good actually during the middle five years …. and that it has had an outsized impact on my comprehension of health care choices, my own relationship to doctors and my health, and my expectations for the future.

Put more bluntly – how do I plan for the second half of my career when I’m expecting that cancer will knock on my door in the next 10 years?

I literally do not know.

I’m working to unwind my intense feelings about watching my mom die of cancer, my dad suffer with blindness that robbed him of his job and kept him in pain every day, his likely death from heart disease since he didn’t want to see a doctor unless he had to, and my own ambivalence toward healthcare for myself.

I will save some of this for another post sometime, as it needs additional space. I understand why a nurse practitioner yelled at me when I was 39 and hadn’t yet had a mammogram. I also understand why I had no interest in getting one. Why ask the question if the answer is going to turn your life into a living hell?

I know that’s irrational. I said I’ve been working on it. (I had a mammogram last week, calm down.)

But I’m beginning to sort out the secondary trauma of my parents’ experiences. Nobody left me a road map for this.

Something to do about it: #Pink

I was introduced to the Breast Cancer Action network and their “Don’t Pink For Me” campaign.

Did you know that the pink breast cancer ribbon was originally peach, and the whole concept was stolen from the woman who created it by Self Magazine, who went to Estee Lauder to co-opt the symbol to put on their products?

Did you also know that there are no regulations or anything preventing literally anyone from plastering a pink ribbon on something, even products containing ingredients that are known to cause cancer?

Breast Cancer Action does a lot of good work, including rounding up research on cancer, putting pressure on government and private agencies to be honest and transparent, and fighting against “pinkwashing” _ using pink ribbon campaigns to get people to buy products when there’s no actual benefit to cancer patients or research.

I really appreciate what Breast Cancer Action is doing to educate people. They offer a number of resources, plus ways to donate to their work or volunteer.

I’ve realized that one thing I can do to honor my parents in my own life is to take care of myself and my health, to be educated, and to put my time and money into causes that can improve things for the folks alive now (or coming after me).

October is Breast Cancer Awareness month. I’ve already had my mammogram – late, but better than never. Go do something this month to protect your health.

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