When you are diagnosed with cancer, everything you hold true about yourself is called into question. You go from healthy to hairless in the blink of an eye. Your breasts are part of your sensuality one minute, then they are trying to kill you the next.
Who are you now that you have cancer?
Who will you be after you go through everything you will be forced to endure?
Who were you to begin with?
These are all questions we end up asking ourselves. Perhaps we don’t ask ourselves so plainly, but when dealing with cancer, every one of us is forced to contend with our mortality, and in the process, many of us find ourselves in the midst of an identity crisis. As we watch our bodies get poked, prodded, and “fixed,” our hair fall out, our faces swell up, our skin dry up, we go numb. We are sterilized. And with that goes our sensuality. Our bodies end up feeling like science projects, not something we want to share with others… ever again.
At least that is what it might feel like at the beginning. All of us are bruised and scarred. Many of us reconstructed. We end up looking different. Some of us are afraid to look at ourselves, nevermind show ourselves to someone else.
But the bruises fade, the scars heal, and you slowly become accustomed to how you look. For me, I had a lumpectomy. The initial swelling worked in my favor: my “cancer” breast actually looked nicer than my non-cancer breast for the first year and a half. The swelling filled it out. But then it settled, and now I have a dent. I have small breasts to begin with, so I had no extra tissue to spare. A dent was inevitable. For a while that dent on the lower part of my breast bothered me. The imperceptible gap on that side of my bra made me angry. I stared at my breasts in the mirror and wondered if they looked asymmetrical. To me they did, but was it in my head? When I raised my arm the indent became more evident, so I made a mental note not to do that in front of my partner, who, by the way, still hadn’t noticed I had a dent at all. I literally had to point it out to him after I told him I was thinking about having it fixed (filled with fat, which I decided against).
What are you talking about? He asked me.
This was the same man who went for that breast before I thought I was ready to be touched. He didn’t ask, he just touched that breast in the moment, and I was surprised. I thought he’d stay away from that side forever, but he just went for it, it seemed, without thinking. To him, I looked “beautiful” (his words, not mine.) All the hangups I had about my breasts were mine alone. He didn’t see what I saw, he just wanted to be close to me again and that helped me to relax. That first time he touched me, I cried. Not because it hurt or because I was upset at him for touching me when I wasn’t sure if I was ready, but because I realized I was still whole, even with my scars and my stupid dent.
We are hardest on ourselves.
Throughout treatment I didn’t want to be intimate and I wasn’t. I felt nothing and I was afraid of my body. I also had hormone receptor positive breast cancer, so, during radiation, I started endocrine therapy, which, in my case, was an aromatase inhibitor with Lupron. I read about the possible side effects: loss of sex drive, vaginal dryness, hot flashes, and a whole host of other less-than-toothsome possibilities.
I freaked out. Just as I was finishing treatment, I realized my sexual life was over. For ten years I’d need to take pills that killed my sex drive? I was devastated. I thought that perhaps I’d be spared the side effects since they are possible side effects and not definite. But I got all the above side effects and more. Not only did I have zero desire to have sex initially, I had to use special suppositories to mimic “moisture” down there so that I could, in fact, prepare myself for the sex I didn’t feel like having. When I finally mustered the determination to go through with it, it hurt.
Upon telling this to my oncologist, I was sent to the “Women’s Health” section of my hospital, where I was questioned and examined, and prescribed a little kit of “tools” that looked like a selection of dildos ranging from very small to very large. I was supposed to use these to “relax” my pelvic wall, which had, like the rest of my being, tensed up during treatment. To accompany my new set of props was a weekly pelvic physical therapy session. Turns out it wasn’t just being tense that had tightened that muscle, radiation had shrunk up my right chest and shoulder muscles, causing my left hip to pull upwards a bit, calling the left side of my pelvic floor to tighten to try to compensate for the shift and pull it back down. Long story short, that muscle had to be manually released. Six weeks later, I was physically back to “normal.”
However, I still felt zero desire. This depressed me. In my group of friends, I’d always been deemed the “sexy” one. So now who was I? I felt like I’d lost my flavor even though I had finally started feeling better about the way I looked; my super-short hair suited me and people looked at me with something resembling respect. Not because they knew what I’d been through, but because they thought I was so confident in my looks that I just shaved off all my hair. I stood a little taller. But did I want to have sex? No. I genuinely thought that part of me was finished. Cancer had killed it and the endocrine therapy was beating a dead horse.
For the first three or four months on the aromatase inhibitor/Lupron combo, I remained sterilized. I was having hot flashes a few times a day and there was zero moisture below. Zero. But then, one day, I felt a little flicker. Like maybe… from there, things seemed to get better. I still needed lubricant and suppositories, but I was finally up for a frolic.
Unlike natural menopause, when we are put on endocrine therapy, our estrogen is suddenly controlled, or, in my case, with the Lupron, completely switched off. Our bodies don’t have years to adapt to this change. It will take time for our bodies to sort themselves out. But they do. And if they don’t, your doctor can try switching your drugs or suggest alternative therapies to help you get back on track.
I was eventually taken off the aromatase inhibitor due to debilitating joint pain, another fun side effect. I started taking Tamoxifen along with the Lupron. A couple months after the switch, my vagina started working again. I no longer needed any help down there. I felt like myself again.
As with many drugs, the initial onset of side effects is often the worst. The hot flashes are hot. Your desire is cold. Your body is struggling to figure out what’s happening to it. Not to mention you are mentally still reeling from everything you’ve been through. Maybe you want to be intimate, but you are afraid. Maybe you want to have sex, but you physically can’t. Maybe you are totally unaffected. Or maybe you want nothing to do with any of it, but you want to figure it out for your partner’s sake. Or perhaps you are done with sex and that’s that. Or maybe you end up like Molly from the Podcast Dying for Sex, and your anti-cancer drugs make you turned on all the time.
There is no way to predict how or what you will feel, but it’s easy to make assumptions. Chances are you will have side effects from your treatments. We are prescribed some serious drugs. But give yourself time and talk to your doctor about the side effects you are experiencing. Pelvic PT sounds like the worst, but it was over quickly and it helped me. There are also things like acupuncture, tinctures, breathing exercises, toys and talking. And don’t forget that our minds are just as good at blocking our sex drive as drugs are.
Go easy on yourself. Be gentle. Cancer might alter your perception of yourself, but don’t let it take you from you. Be patient and don’t forget that you, and you alone, get to decide who you are.