A Magical Door
You’d think that nipples should come as part of the package, kind of like a God-given right. But I had to battle an insurance company to get mine. A little over 20 years ago, insurance companies didn’t have to pay for reconstructive surgery at all for women who had lost their breasts to cancer. But that all changed in 1998 with the passage of H.R.616, the Women's Health and Cancer Rights Act of 1997 (WHCRA). It was on this law that I relied to get my nipples reconstructed just 7 years ago.
Today is Day 1 of Breast Cancer Awareness Month, and while many of us cringe at the pinkwashed branding the media and consumer economy has capitalized on for so many years, I for one, am excited. This is an opportunity to continue to raise awareness about breast cancer, how to prevent it, what to do if you suspect you have it, and how to support those who do have it. Hearing the brave and honest stories of patients and survivors can inspire all of us to live better, do better, and be better people. Thrivers like myself and so many others can share our stories and express ourselves so that the TRUTH about breast cancer is visible.
Breast Cancer Awareness Month is also about advocacy, and I would like to explain why the passage of the WHCRA was so important and highlight another issue that is close to my heart and that I hope to see resolved in this decade.
Every Thursday I participate in a writing workshop with other cancer survivors. Today, the facilitator asked us to imagine that we had a magical door in our house that could lead us anywhere in space and time. As I sat down to address the prompt, I was surprised by what came pouring out after all these years, and I would like to share it:
My magical door leads to an alternate reality where I still have all of my parts. I feel soft, pillowy, a lightness on my chest. I sleep on my stomach because I can, and I do push-ups with the rest of the class during a workout. I don’t feel pain in my shoulder and left arm. When it gets cold I wrap my arms around my chest with embarrassment, and I spend extra money on bras and clothing to accentuate my natural curves. I look in the mirror and see femininity and sensuality. I belong in the locker room. I don’t feel pangs of jealousy when other women talk about breastfeeding. I feel useful. Things work the way they should. I am undamaged and whole.
Unfortunately, not even the best plastic surgeon can give me back what I lost. But my consolation implants have certainly helped me cope and move on with my life. Can you imagine what things were like for most women with breast cancer before insurance had to cover reconstructive surgery? As I was looking into the history of the law that got me my nipples, I noticed something amazing. It was sponsored by a Republican! Over a hundred co-sponsors of the bill came in throngs from both sides of the aisle. I felt a sense of hope wash over me.
Which brings me to the issue that I alluded to above: Fertility preservation and treatments for cancer patients and survivors. Many types of cancer, and certainly breast cancer, are treated with toxic chemotherapeutic agents. While effective in killing cancer cells, they also kill a lot of other things, like hair follicles and white blood cells. And eggs.
Women are born with all the eggs they will ever have in their lifetime. Chemotherapy can destroy the reserve of eggs so that a woman is either rendered totally infertile after treatment (premature menopause), or so that she suffers from reduced fertility due to DNA damage and low ovarian reserve. The only way to resolve this issue is by cryopreserving eggs and/or ovarian tissue prior to chemotherapy and/ or by offering fertility treatments to survivors post-chemotherapy.
When I went through cancer, this wasn’t covered by insurance. And in most States, it still isn’t. California passed a law in 2019 mandating that certain insurers must cover fertility preservation for cancer patients, but many employers are exempt and the coverage does not extend to anything other than preserving gametes before chemotherapy. There is no coverage for women who later on want to use these preserved eggs or embryos (a procedure which costs thousands of dollars and may require multiple attempts). There is no coverage at all for women who were unable to preserve anything or who did not preserve enough to reasonably guarantee success. And the federal government currently offers no protection in any of these situations.
I have to ask myself, why is it that the government sees it as so important that I should have breasts, but not that I should have the ability to become a mother? Is it because they can’t stand the thought of what I would look like if I didn’t have boobs? Is my physical appearance so much more valuable than my ability to create and love?
This country is broken in so many ways right now. But progress like this could bridge gaps and bring us together to fight against a common foe. I hope that we will begin to see bipartisan support for an amendment to the WHCRA that will help give breast cancer survivors back a piece of themselves. A quiet piece that no one talks about in Breast Cancer Awareness Month. A piece of which you are now aware.