It's a common perception that only older women get breast cancer — old enough that they don't really care if they ever have sex again. And boobs? Whatever, take 'em. They already nursed their kids and the ta-tas are just getting saggy anyway. Right?
Wrong! I'm 26, and I have cancer in my breast. And no matter what age, women still want to be treated like the gorgeous creatures we are, even when hairless, probably throwing up, and left ravaged by a mastectomy.
When I discovered my lump at 24, I was nearly scoffed out of a male breast cancer specialist’s office, who said I was statistically too young to have it. After some surly resistance on my part, I had my unidentified lump removed, but technically he was right: I didn't have breast cancer. I have a vascular tumor called angiosarcoma: a very rare and nasty cancer that normally shows up in the heart or bone. And here I am now, two years later with different doctors, a new diagnosis and a 70 percent chance of dying within the next two years.
Requiem for a breastThe months after my diagnosis were a painful blur. My boyfriend, Adam, doggedly called me beautiful and made sure that I was able to believe it. He was so caring and supportive when my oncologist said I would likely not have children because of the chemo. Instead of complaining or bolting for the door when my doctor said no sex because of the infection risk, Adam said: "I will wait for years. I don't care about sex; I just want you."
I know that if our roles were reversed I would have done the same thing for him, but sometimes it's still surprising to know that a person can love enough to put up with everything that you have to go through. I know he puts on a brave face for me every day — and I have seen him break down when he didn't know I was looking. My bald head is covered in kisses, pats, rubs, and fuzzy hats whenever he comes home or if I look sad or feel ugly. That is commitment. I wish everyone had a relationship like ours.
Here is the skinny on the treatment of rare cancer in the boob (I call it the slash, burn and poison method): single-agent chemo, mastectomy, radiation and more chemo. If that sounds familiar, it is. Oncology hasn't changed much since the 1950s, although the drugs that treat the side effects have.
On chemotherapy, the first hair to go is on your naughty bits (less painful than a Brazilian bikini wax!). Later your boyfriend will use duct tape as a makeshift lint brush for your head. You'd better load up on laxatives before infusion or you WILL suffer the consequences. And eat delicious, fattening foods right before chemotherapy, for you will never again be tempted to eat them. I used food aversion to my advantage; it makes dieting so much easier. Now if I even think about cheesecake, ham and gnocchi, I dry heave.
That was the chemo, but I cannot really put into words the grief that I felt when I got the call from the surgeon, telling me I had to have a mastectomy. My PET scan showed that the chemo was doing nothing, and the surgeon decided he wanted the tumor out in two days. Now, it is one thing to know the date for something and mentally prepare yourself, it is another to have someone spring a mastectomy on you. I tried to think to myself, "OK, whatever, it's a boob. It sucks but hey, it's not my arm, right?" but I wasn't ready. It felt like I was burying my youth.
Adam took many pictures of me that last night with two breasts — wig and makeup fashionably in place — while I pranced around in heels and lingerie. I'm happy we did that. It was like a small requiem for my breast.
After the surgery I had a village of visitors: co-workers and family, and Adam was there day and night. He slept in the same hospital bed as me, crammed up against the bars of my bed and my morphine drip. He teased me that if I got lost in the desert I would walk around in clockwise circles because I was lopsided (morphine makes everything funny). When I was home, he emptied the tubes that drained fluid from my body and dressed my wounds. The first time he saw my chest he cried a little. I cried a lot. He kissed my incision and said he "was a butt guy anyway."
Becoming whole againIt was so emotionally difficult to lose a breast. I'm not a very emotional girl, but it got to me. I kept feeling that I was supposed to be whole and beautiful and that I wasn't anymore. I felt broken and mangled.
I was expecting pain after surgery, but there was very little. It was akin to the soreness the day after a hard workout. What I was not expecting was the total lack of feeling. The left side of my chest is totally numb. I can't feel touch, pressure or pain. It was sort of a blessing in disguise because I didn't have to feel anything when they removed the skin staples and largely felt nothing when radiation made my skin resemble cooked bacon.
It took about a month to get used to my body post surgery. There is no preparing for how much of our sexuality we have tied to our breasts. At first I cried a lot and didn't want Adam to see me naked. I couldn't even imagine sex — even though I wanted and needed it. I felt self-conscious; I kept thinking, what if he's turned off? What if he can't have sex with me because I'm unattractive? I think at that point I wouldn't have been able to endure rejection or the idea of him not being able to get aroused at the sight of my missing breast. My best friend bodily dragged me out of the house to Nordstrom's where I was fitted for a prosthesis. It was her gift to me, a new fake boob. I will be eternally grateful.
After I had a fake breast, things got a lot easier. I learned that dressing up in the bedroom was the only way I felt comfortable having sex. I had to pretend that I was whole again. I wore a long, dark movie-star wig, a barely-there skirt and a button-down top (fake breast included) the first time we had sex post chemo and mastectomy. I looked like a hot Catholic schoolgirl and pretty much mauled Adam the second he got out of the shower. The role-playing helped a lot with the uncomfortable parts.
Before all of this cancer drama started, I liked to dress up in sexy bedroom outfits and drive Adam nuts. I think for both of us it was easy to pretend that by dressing up it was just like it used to be. From there we evolved into less theatric sex, and I started to not wear the breast form as we became more comfortable with my new topography. Adam is such a fantastic partner that the awkwardness I thought would be there wasn't. Believe me, if your partner can battle cancer with you, he's a keeper. Anyone that can get aroused by a bald, single-breasted girl is worth his weight in gold.
Sometimes it's difficult to view myself in the mirror and not sigh. I hate how my hair has grown back in curly. I'll go to adjust my cleavage to realize I have nothing there. Finding clothes that don't draw attention to my concave chest can be a challenge. I can't have reconstruction for two to three years because of the reoccurrence risk of my type of cancer (it would be terrible to have to take apart a reconstructed breast).
So for the time being, I'm stuck with mastectomy bras and breast forms, which seem to have been designed by idiots — and for people who still have breasts! I need something to fill my concave cavity, but the forms themselves are concave on that side, expecting a small breast to fit in. And the bras are all the grandma-type that look like they've been shaped together out of waffle cones. News flash, designers: women who have lost a breast still want to be able to feel sexy! Is that so much to ask?
Still, I have learned a lot of things I might never have known. As women, we have a tendency to nit-pick at the small stuff like love handles and big thighs, but when it comes down to it, we are not a sum of our parts. Being beautiful really is a state of mind. Physical beauty is fleeting, but if you maintain the idea that you are a goddess, you can be. Some makeup, a short skirt and heels can make you a tiger in the bedroom — even if you are missing a breast. The things I have learned this year about beauty and strength were not easily garnered, but I consider what has happened to me a gift. I can still turn heads walking down the street … I just have a little secret.