It's hard to watch someone choose to end or forgo conventional treatment without succumbing to the urge to educate. But education isn't always what patients need.
Martha lives in Illinois and was diagnosed with metastatic breast cancer in January 2015. She has a husband and three children, ranging in age from 12 to 18, a dog and a lizard.
Two of the most painful moments in my life with cancer had nothing to do with literal pain, prognosis or treatment effects, but they’ve stuck with me through my years with metastatic breast cancer. They are the first two memories that flood my mind whenever I’m confronted by someone insisting that I change my habits or my treatment. They’re also the ones that help me to pause before speaking when I meet an advocate for treatments that I believe are harmful.
In short, these moments remind me to accept and respect what others are going through.
The first occurred very soon after my diagnosis. I was just starting to tell people about my diagnosis without having to cut the conversation short so I could go home to cry. While dropping off my son at school, I ran into a woman who’d been exceptionally kind to me and my children over the years. I wanted her to know what was going on because I would see her every day, I cared about her and I didn’t want to have to hide the loss of my hair. I suppose, as I think about it now, that she was the first person I told who wasn’t a close friend or family member.
I told her about my diagnosis and received the expected condolences and urgings to “beat it” but she then paused and asked if I was going to have chemotherapy. I replied that I was and she said to me, “Oh, don’t. That’s what killed my mom.”
I covered up my shock pretty well, I think, but I didn’t walk that way again during the rest of the school year. As a patient, I didn’t need to hear those words and I certainly didn’t need to hear that my treatment could kill me when I’d only just begun to understand that my disease would likely do that on its own.
The second moment of painful clarity didn’t even involve me—I was simply friends with two people who were friends with each other on social media. One of them had terminal cancer and the other considered himself an ally of hers. She struggled terribly with her disease. It had progressed quite far by the time of her diagnosis and her doctor made the unforgiveable choice of giving her a specific timeline as part of the diagnosis. She believed she had six months to live and, in fact, she died right on his schedule. Our mutual friend took to social media to not only grieve but to express that she’d “given up,” and that if she had fought to live, she’d still be alive. His pain and his unwillingness to understand that cancer kills even the “warriors” among us hurt me and probably many other people who live with a disease that sometimes lets someone look almost perfectly healthy on the outside while being chewed up the inside.
I know what cancer is like for me, but I don’t know what it was like for my acquaintance’s mom or for my Facebook friend. I know that I believe in the scientific research that continues to fuel the breakthroughs keeping many of my metastatic friends alive.
But in this world of cancer treatment, science can sound like a bad word in some circles. There is always some new therapy popping up, claiming to cure the disease. And there are always patients desperate enough to forgo standard treatment to give that new “secret” a try.
I’ve met a few of these desperate people. Maybe someday I’ll be one and I try to remember that as I squash the urge to shout about how misguided they are. I can be the world’s greatest empathizer, but I still don’t know what it’s like to live with someone else’s cancer. I don’t know what pain feels like to them, or fear or loneliness. I try to be understanding and sympathetic. I do mention the risks of choosing an unproven treatment over accepted treatments such as chemotherapy, surgery and radiation.
But, ultimately, treatment decisions belong only to the patient. I’d longed for acceptance that day years ago when I lost the comfort I’d hoped for because my neighbor chose to judge my choice. Similarly, my social media friend wanted acceptance of her own choices and she also wanted her friend’s respect – even after death – that she alone knew what she was experiencing.
It is truly difficult to keep those two ideals — acceptance and respect — in mind when you care deeply for someone who you believe is choosing the wrong path for their treatment. At this moment, though, as I look out at my friends with stage 4 disease, I know for certain they are the two most important and loving words in my vocabulary.