5 min read
by Emma Glassman-Hughes | 05/11/2016
Just because October is Breast Cancer Awareness Month doesn’t mean we shouldn’t be talking about, learning from, and supporting the many, many women (and some men!) who are diagnosed with this disease aaallllllll year long--especially when it’s National Women’s Health Week (ahem, yes it is happening right now. And yes, you still have time to get us a present). This week, we caught wind of a Philadelphia-based organization called Living Beyond Breast Cancer (LBBC) that does tons of advocacy and philanthropy work for those who are diagnosed with the disease, for survivors, and for family members of those affected. LBBC has partnered with one of the more rad companies ever created called CalExotics, which is one of the first woman-owned sexual novelty companies ever, started by badass Susan Colvin in California, and which sells products specifically designed and sold for the empowerment of women users. However, this week is particularly special because yesterday, CalExotics in partnership with LBBC launched a whole new line of sex toys specifically for women who have undergone or are currently undergoing breast cancer treatment.
Most people don’t know much about how the disease and the treatment impact a woman’s sex life (hint: the answer rhymes with a bot) because this kind of thing is rarely ever talked about outside of support groups and interpersonal relationships, and usually even then it goes unspoken. I wanted to know more about how the disease complicates a woman’s sexual health, so I chatted with Christina Meehan of LBBC, who happens to be a survivor of breast cancer, and who taught me so much about the taboo-smashing work these two organizations are doing in conjunction with one another. Take a peep at our conversation to learn some stuff!
We’ve been a partner with [CalExotics] for about 10 years now, starting with the original Papillion massager and small vibrator that they created specially for LBBC, with our logo on it and everything. Our partnership works so that people can shop CalExotics products, and some of the money then goes back to us at LBBC. The line that’s launching this week will be the first full line ever created to benefit a non-profit.
There’s a very serious lack of information out there for women with breast cancer. The media highlights the same few negative sides effects of cancer treatment, all that mostly have to do with the way a woman looks: women lose their hair, and they lose weight, they often lose one or both breasts, etc. But no one talks about the sex lives of cancer survivors. No one talks about how you lose your sex life and your drive along with having cancer, that this strains marriages and relationships, and that some women just have no desire to have sex whatsoever. This is a very common side effect of breast cancer treatment, especially with hormonal therapy. This conversation is only happening online and not in relationships, not in the doctor’s office--some doctors are even uncomfortable talking about it. And the truth is, there are all kinds of strains: people don’t find themselves attractive anymore [after losing one or both breasts], and approaching the subject of sex with someone who may or may not know about your diagnosis can be very challenging. Also, people don’t know that the vaginal walls are actually thinned by the medication people take which makes sex very painful. There’s just so much information that women don’t have access to.
CalExotics is really coming from a place of ‘women should make products for women.’ Before Susan Colvin started this company, the products on the market were typically black and gray, very phallic in shape, and not really made with the idea of making a woman feel comfortable. Susan wanted to change this. This line is meant to have a woman take control of her sexual health, to open up conversations with others and also with herself, and to remind her that she deserves happiness and pleasure even in spite of her cancer. Plus, these kits come with a 60-page guide to understanding sexuality and intimacy after cancer that has been written by our experts at LBBC, that really comes from a place of empathy and familiar experience. Breast cancer can just do so much damage to a woman’s sex life, it’s important for women to be supported as they ease back into their daily lives.
As of now, there are nine products in the line, and they’re working on two more. But within the line, we have things like a dilator kit, which is meant to stretch out the vaginal walls to prevent that pain during sex; we have sex toys that can be used with a partner or without; there’s a kegel training set and exerciser; there are vibrators and remote controlled products like a vibrating remote intimate teaser and a remote breast massager and arousers. None of these products look scary, they’re a light pink color; they’re light and airy, and they look and feel like they were made by a woman. There are also how-to videos on the CalExotics website (not creepy videos!) to show women how to use [the products] because some women just don’t know what to do with a vibrator, no one taught them. I’m really hoping this line opens some conversations for those who are dealing with some of these issues. In fact, each kit comes with our very own guide to intimacy and sexuality which reminds women that it’s possible to be intimate without having sex. That’s what some of the sex toys can certainly be used for, as well.
LBBC hosts national conferences, and actually the most recent keynote spoke about intimacy and sexuality. This is always the most popular topic with our followers because women are truly kept in the dark about a lot of this information. We also host one conference that is specifically for women with fourth stage, or metastatic, breast cancer because the needs of these women differ from the needs of some of the others. We also host Twitter chats, and no surprise, our most popular chat was called ‘From Between the Sheets’ all about sex and intimacy after breast cancer. Similarly, we host monthly webinars, and we held one about nutrition after breast cancer which is also different. We have a breast cancer help line where women can call for support if they don’t have it at home, or if they don’t want to or can’t cry in front of their family. Plus, LBBC has resources for women struggling financially to make rent payments or mortgages, or things like that. We have a writing program for women who are struggling to explain their pain, and in it, they work with a specially trained writer to give these women the impetus to share their story and see it through a different way in their writing. We’ve got a young women’s program in New Jersey, Pennsylvania, and Delaware, and women have access to a grant provided to help them make payments on things, as well. We’re special, too, because the money that we raise isn’t going to huge salaries; 87 cents of every dollar goes back to the programs and the services at LBBC.
And finally, instead of doing a traditional charity walk or run, we do a massive outdoor yoga class as one of our biggest fundraisers. This coming Sunday on the Rocky Steps [or the Philly Museum of Art for those out-of-towners] will be this year’s class, and check-in starts at 7:30 for the 9:30, hour-long class. There’s also a healthy living expo with healthy snacks, exhibitors, and a yoga mat company/partner of LBBC that uses water-based inks and sells recycled water bottles. It’s all a very organic-feeling kind of day. Registration can be done day-of, and we’re expecting about 2-3,000 people--mostly women in treatment, those out of treatment, or those who have lost a loved one. It’s a very uplifting morning; yoga is very beneficial to those in treatment and those out of treatment because it’s soothing and it can be modified for any body type. Our goal is to raise $400,000. Also notable, this yoga class has become a national event! We’ve got them in Denver, Kansas City, Fort Meyers, FL, and DC, and on Sept 17 and 18 we’re hoping for 25 different yoga events in honor of our 25th anniversary.
Well, what I’ve found after I chat with other women who have been diagnosed is that some women don’t know that they can get second or third opinions, or they don’t feel comfortable enough to ask questions of their doctors. They think, oh, he/she is the expert, who am I to question their authority?, which is discouraging because they may be suffering in a variety of different ways. If you don’t feel comfortable with a certain doctor or situation, you can always go to another doctor. There are other great non-profits that can work with patients to move them around and get you somewhere else if you need it, even in spite of insurance issues. But fortunately, [when I had breast cancer] I was lucky enough to feel confident in demanding a second opinion. This line [by CalExotics], I hope, encourages women to open their mouths more and feel more confident doing so, advocating for their health and wellbeing. There are a lot of physical changes after the diagnosis, and sometimes I struggle to feel like a whole person; I have a lot of scarring, and sometimes I tell myself I’m disfigured, no one is going to want to have sex with me, which is just not the case. But, it’s important to express those thoughts in a support group or to a doctor. Women need to feel comfortable expressing concerns about their sexual or mental health because a lot can change this way.
by Emma Glassman-Hughes