Still Mad

This is a repost from last May. Now that it’s Breast Cancer Awareness Month, I felt like posting it again. There have definitely been great strides in making everything pink for October, but I’d like to see a little more progress in actual treatment and care. I hope you’ll pardon me as I rant—again. xo

My pink bracelet is fading from years of constant wear, but Annie’s bracelet is loud and clear.

Breast cancer awareness has been on the cultural radar since 1985 when First Lady Betty Ford helped kick off the partnership between the American Cancer Society and Imperial Chemical Industries, a pharmaceutical company, to inaugurate Breast Cancer Awareness Month.

The National Breast Cancer Foundation (founded in 1991) declares on their website: “From a simple piece of ribbon affixed with a pin, we are able to show our support for loved ones battling breast cancer and our hope for a brighter future.”

Hope? That’s all we’ve got? Hope and pink ribbons? Maybe it’s taken the unbelievable and horrific experience of my daughter’s diagnosis of breast cancer to ignite my rage, but I’m sick of pink ribbons and I don’t have much hope, either. Now, I’m angry.

I’m not typically an angry person, nor do I want to become one. But it’s getting harder and harder to slip on a rubbery pink wristband every time someone I love gets a cancer diagnosis.

My sister, a breast cancer “survivor” went 18 months being treated for IBS before excruciating pain sent her to the ER where she was finally given a CA125 blood test (to detect ovarian cancer) and her levels were over 500. Or 5,000 or 5 million—who cares? It definitely wasn’t within the <35 range that is “normal” and it was a test which should have been done months and months earlier—as a cancer survivor. Instead, she was prescribed dietary changes and IBS medications for months. She also endured a range of experimental treatments that continued to bombard her body with chemicals and surgeries until she died from stage 3 ovarian cancer a few short years later.  

My mom was coughing. Repeated visits to her doctor resulted in trying this medication or that, with no success so she was sent to the hospital to drain her lungs. It’s pneumonia, they told her. But, after she discharged herself because she wasn’t getting any relief, the coughing wouldn’t stop. Then, her doctor ordered a procedure called something like a peel that would scrape off any build up in her lungs that was causing the fluid. Except she didn’t get that procedure; when the surgeon cut open her chest, he discovered her lungs riddled with cancer and closed her back up. It was still another month before we got the official diagnosis: stage 4 lung cancer. She died three weeks later.

We are a family who knows how to stay in our lane. We respect our professionals. We don’t typically question our doctors or lawyers or teachers. We mind our manners.

But now my girl has been under treatment for almost two years and over and over again, delays, conventional treatment and insurance issues have elevated her once diagnosed Stage 2 breast cancer into metastatic stage 4 cancer that has now invaded her skin. And I have to ask…is this the best we can do?

With Annie, a 12-week round of chemo, a lumpectomy, and follow up radiation was prescribed. But, two weeks before the lumpectomy, it was determined she needed to have a bilateral mastectomy. After the surgery came immunotherapy, to which she almost immediately reacted with colitis. So, they stopped it. Her doctor joked that her cancer wasn’t acting like it should. Ha-ha. They still followed the plan from months earlier and started radiation, but she needed physical therapy first. Then, after the eight or so weeks of radiation: Remission!

Yay, but wait--I was skeptical—how had they determined that? How did they measure that outcome? I was cautiously hopeful, because who can deny that word sounds really good? Remission. Remission. I began to like the sound of that word.

But a month later we were plunged back into more frightening words like metastatic. Before we could even plan the party to celebrate her remission, she was stage 4. Metastasized breast cancer. And back to more rounds of chemo.

Side note here: I always thought, “Why wait 3 months for scans?” If her cancer wasn’t “acting the way it should” why was conventional treatment being followed? Why were they doing for her what they did for everyone? Even when Annie brought the concerning rashiness on her chest to the attention of her team, it hadn’t been three months, and that’s when the tests would be done. And the test showed “progression.” Another word that seems like it should be good, but it’s bad.

Here’s what’s important: None—NONE—of the incidences of the growing cancer was found from the treatment of the initial Stage 2, Triple Negative breast cancer diagnosis. All the “somethings” that showed up were results of tests for other things…an MRI for the colitis found the spots on her liver and chest wall, a skin biopsy that was done during a yearly check up with her surgeon who sliced a bit of skin off her chest because she happened to be sitting there.

If we were relying on the conventional treatment that her doctors had ordered, none of this would have been discovered. She, quite literally, could be dead right now. As it is, her death sentence has been moved up due to the decisions of her care team to maintain the current course of treatment.

Fuck the pink ribbons. This has to stop.

Young women are dying. Or are preparing to. We need to make some very drastic changes to the way we care for the women in our country who are being attacked on a daily basis by cancer.

Forget the pink ribbons…where are the researchers? Where is the money? Where is the progress? Where is the outrage when time after time after time we watch another family scramble to keep their loved one alive? Or, we are that family.

Living in anger isn’t going to make anything different and it will actually rob from me the time I have with Annie. However, I do believe that anger is a motivating emotion, a catalyst for change when a situation gets to be too much to bear. And I’m tired of it all being too much to bear.

I’m tired of insurance companies determining who gets treated and who doesn’t. Tired of arbitrary decisions of time and eligibility for lifesaving medications and testing.

I’m tired of politicians sucking on the teats of the insurance lobbies and protecting their positions by sacrificing the lives of young women and their families.

I’m tired of behaving and minding my manners and not questioning the professionals we are supposed to trust. 

I’m tired of awareness. I’m tired of pink.

I want action.  

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Note: So far, the action I know how to take is by writing about it, to keep the conversation going, to elevate awareness. Annie and I are writing about it together, too--here’s our first essay from almost a year ago—Can We Talk About Cancer?