My mother spent the first 23 years of my life suffering from various battles with cancer. About a year or two after I was born, she got uterine cancer. They removed her uterus. When I was 12 the breast cancer hit, and they removed a breast. Once it got to her bones though, when I was in college, that was it. She held on for a couple more years, long enough to see me graduate, but finally passed when I was almost 24. That was 12 years ago.
As Angelina Jolie so bravely and eloquently said in her recent op-ed about her experience with breast cancer, there is testing now that can help some women evaluate their risk. The test Jolie mentions determines whether you have a defect in the BRCA1 gene, that can greatly increase your chance of developing breast cancer. Even if this genetic testing existed in my mother's time, I doubt she would have gotten it. She was the first in her family to get breast cancer. There was no reason to think it ran in the family (in most cases it doesn't), until one of her sisters and her mother were subsequently diagnosed. For women in my family and families like mine, the test could make a lot of sense -- and potentially save lives. As Jolie mentions, by having that test and then taking the preventive step of getting a double mastectomy, her chances dropped from 87% to less than 5%. In other words, she went from probably getting breast cancer to probably never getting breast cancer. But as Jolie mentions, most women can't afford the test. Or the surgery.
When I read her op-ed, it was impossible for me not to think of my mother, and not just in terms of the breast cancer. When Jolie described how the children she had would never know her mother, I thought of how any children I may have would also grow up without a grandmother. They would certainly get stories and pictures, but could never make their own. They'll never know what she felt like, or how she smelled, or how wholly comforting and wonderful it was just to be around her. How just being next to her could make you feel safe, and that was all you needed to believe that things were going to be ok.
I don't know if my mother could have been saved, or simply had her life extended, if she had better access to medical care. It's possible that for her, there wasn't anything else to do. For so many other mothers though, that is not the case. We have better technology today, like the BRCA1 test and advancements in reconstructive surgery, and it should be available to all women and men. The cost for the test ranges between several hundred and several thousand dollars. Some insurance policies will cover it, but not all. One of the reasons the test is so expensive is because one company owns the patent on the gene, which prevents other researchers from developing better -- and cheaper -- tests.
My family wasn't able to afford something like a preventive surgery, but my mother didn't have that choice, anyway. She had to lose her breast upon being diagnosed. Jolie mentions how it's comforting to know her children won't see anything disturbing, due to the reconstructive surgery. My mother never got reconstructive surgery. She got new bras to hold her prosthetic breast, and had a large scar where her breast use to be. Like Jolie though, it didn't seem to shake her sense of her womanhood or femininity. In fact, I've always thought that the way she handled everything was incredibly admirable. I was going through puberty at the time, and generally hating everything about my body. To see her literally losing parts of hers, but soldiering on and successfully coping, was a lesson all its own. Still, I can't imagine it was easy. And if we have the ability to help women maintain more of their bodily integrity, then why not offer that to everyone? At a cost that everyone can afford?
I am grateful to Jolie for telling her story. No one should have to go through something like that, to feel as if the only way to see your children grow up is to surgically remove parts of your body. But it is still a million times better than not being around at all. Jolie was able to access a way to maintain her livelihood and her family. That's something all women and men should be able to do.