I only met Jayne Rogovin once. But oy, such a once.

by Gina Binkley, for HER

She agreed to let me interview her for a story I was working on about breast cancer. It was to be the “real story” of the disease, without the Hallmark-card sentiment found in so many women’s magazines.

Jayne, it turned out, was more than eager to show me the real. She didn’t gloss over the bitter realities: She’d been diagnosed with Stage 4 breast cancer. It was terminal, she explained. There was no cure.

For the next hour, I was privy to one of the most extraordinary conversations I’ve ever had. I’m drawn to frank people who aren’t afraid to say things that might make people uncomfortable. Jayne is nothing if not frank, and I wasn’t uncomfortable, not in the least.

She talked about things no one much talks about, things most folks would stow in the “too private” drawer and keep quiet about. If you can imagine, she had me laughing—not polite “must not offend the cancer patient” laughter, but snorting, tearful laughter. And she never apologized for telling the ugly truths, never averted her eyes from mine. I left her house that day profoundly changed. And I’m grateful to her for it.

Here are a few highlights from that unforgettable conversation—wisdom, humor, and justified ranting, a little something for us all to remember her by:

On baldness: I had a head of hair. I mean, hair was my identity. And they said after 3 weeks of chemo, you’re going to start losing your hair. Well they weren’t kidding. It started to come out in clumps. It was awful, It was like mange. I was hysterical, and I said, I’m not gonna do this. And I went and I had it shaved, and that was the most freeing moment. And I was bald, and I looked, and I just went, “Me!”

Why do you have to look good? Going through this? … I don’t want to wear a wig. I don’t feel like I have to put on makeup. When I run around bald I know people are like, ‘Hhhhh!’ (gasp) Even now I have a little chemo fuzz and people are just like, …That’s your problem! I don’t feel like I need to look a certain way. At all.  (*Instead of wearing a wig, Jayne told me, she often wore a “F*ck Cancer” hat. I loved this.)

On pink ribbons: I’m not a girly girl. I’m a tomgirl…Grew up surfing in Miami, and I hate pink. I hate frou frous, I hate little bows and little dogs, and that’s what the whole pink thing reminds me of. Because it tries to put a nice pretty package on a terrible disease. In my humble opinion, for fundraising. I’m calling it like I see it. I think it’s wonderful to raise money for research, and I think it’s wonderful that we can talk about breast cancer now, thank you Betty Ford, for that, but this whole Kum BaYa pink ribbon, let’s wear a shirt? Not my style.

And the other thing that pisses me off is people trying to make a buck off of our disease.”We give part of our proceeds to,” or makeup companies donating their products, which are not healthy. The foods that are not healthy. There are a lot of people that jump on the breast cancer bandwagon. 

On sex: When you’re bald … and you want to throw up all over the toilet and the treatment takes all of the hormones out of you and it kills your libido, the last thing you want to do is have sex. You don’t feel pretty about yourself, you don’t feel anything. It takes away your womanhood. So combine cancer with menopause, and you’re screwed. It’s an ugly disease.

On misguided comments from people: Just say, “I’m sorry to hear that.” That is all I want to hear. Don’t say “Oh, my aunt had it, you’ll be fine.”…That’s not my cancer… A lot of women aren’t fine. I know it’s cold and callous, but when people go, “Oh, you have cancer, what kind?” I come right out and say “Incurable breast cancer, stage 4,” and that stops them from saying “My mother, my aunt, my sister.” Because sometimes I’m really tired of being gracious. I feel like I have to be gracious and put people out of their discomfort. And for the most part I am, except with stupid remarks.

On health insurance: I had a huge problem with the health insurance that I had. It didn’t pay for most of it. So I ended up owing a lot of money to Centennial who pissed me off, and you can put this on record. When I called up to make payment plans, they wouldn’t accept my payment plan. They wanted more, they wanted $350-400 a month, and I said I couldn’t do that. A week and a half later they had sent my bill to a debt collector, and it ruined my credit I had worked so hard for…And that’s one of the ugly sides of cancer.

What nobody knows about cancer: It’s a game-changer. Your life is just trucking along and then one day…it changes everything…Mine is for the rest of my life. So the hardest thing is just trying to live with it always in the back of my mind that I have this disease inside of me that will probably kill me one day. I mean, we’re all going to die sometime, but it’s a lot more difficult knowing and living with it. 

On wacky advice: Don’t tell me about this person drank this tea and it’s fine, this person drank that, ate these apricots and it’s fine, and go to this homeopathic, and you shouldn’t take chemo, it’ll kill you, and you should do this and you should do that?…I don’t want to hear about the doctor in Mexico. It is my path. It is my choice.

On living life: Until I can’t make plans anymore, I make plans. I wake up, I work, I take an hour and a half to train, and ride the horse 3 days a week and on weekends. And every once in awhile I have a pity party. About once every 2 months or 3 months. And it usually revolves around not knowing, the unfairness of it. And the hardest thing for me is to find a balance of living in the moment, and living in the future…That’s the hardest thing. Living in the moment, and planning for the future.

On John, her boyfriend:  He’s a good man. I’m very lucky. A great guy! He manned up. A lot of men don’t. I remember when I bawled and all that kind of stuff, and he was playing grab ass and was like, “You’re still sexy to me!” And here I am completely, like, Star Trek bald. That was my joke when I was bald, I’m a big trekkie and I love SciFi, and I was like, “Cast me please! I could be on Star Trek now!”

On friendship: Kay West quoted I forget what writer that was; she writes for Salon. She wrote, “Cancer doesn’t show you what you’re made of. It shows you what other people are made of.” In my case I’ve been very blessed that my friends and family are made of the right stuff. And that’s my takeaway. 

Related post: Pink Ribbon Pushback

Click here to read the full Her Nashville story featuring Jayne Rogovin