I have the great privilege of counting Mariah, a two-time cancer survivor, as a reader. We got to know each other over the course of some correspondence and I was inspired by the way she reclaimed, and expanded upon, her sexuality after cancer. I asked her to take a boudoir photo and tell me, not just about her sex life, but about how her sexuality has evolved. Read on for her story.
Just prior to my 41st birthday I got into my boyfriend’s car to go grab lunch. I put on my leather jacket. It was one of those tight, biker-style things, so when I slid it onto my left arm, something hurt under my armpit. I found a lump. A stab of fear went through me.
I called my GP. She saw me right away and scheduled me for a mammogram and biopsy. The results came in a few days later. My doctor called me at home at night after office hours to let me know it was cancer. I just cried. She gave me details. It was fuzzy, but I managed to hear “Stage IIb.” I called my counselor. Luckily she was around so I could cry my eyes out to her. My counselor was also a cancer survivor (we hate that word but everyone uses it). I was so scared.
I decided to do a left mastectomy and tram-flap with reconstruction at the same time, then chemotherapy. I was going to enter a study, so the survival odds (if I didn’t get the standard chemo regimen) would increase from 65% to 85%. I did get the study drugs. They were killers.
The surgery was a 5 day ordeal in the hospital. Kind of a tummy tuck, muscle-move, boob-rebuild. I felt like a monster. It took about 6 weeks to stand up straight. When the doctor rebuilt and tattooed the nipple I started to feel more female again. Then the chemo started. Talk about death warmed over.
It took a while to be able to look at myself in the mirror.
The problem with the surgery is that wherever they tunneled under the skin, it lost feeling because the nerves were disconnected. I didn’t want anyone to touch my stomach or breasts. I decided to keep my right breast because my nipples were such huge erogenous zones. Unfortunately the left one was gone. It was the most sensitive. How to get that desire back? How do I start looking at myself and possibly like myself again?
I just about got there. I started to feel sexy. My nipple(s) liked being touched again.
The second whammy hit about three years after the cancer. My mom was diagnosed with ovarian cancer. The chemo did kill her. Because of that they decided to test me for the gene. Lucky me! I did have BRCA1. That meant I was 87% likely to get breast cancer (done) but also 65% likely to get ovarian cancer. Oops. My oncologist told me it was time to get an oophorectomy (ovary removal). I also had HPV from years before, which can cause cervical cancer. My OB/GYN just recommended we get rid of it all. Full hysterectomy. I was devastated. When I had chemo, my period stopped (as is normal…chemo-pause is the nick-name). My doctor told me it was unlikely that it would come back because I was 41. After chemo everything started back up. Victory! My body won! Then this. It felt like cancer won after all.
What I didn’t expect after that surgery was the complete shutdown of my desire.It was worse than during chemo. On top of that my vagina dried up and tried to blow away. It was so painful. Back to the OB/GYN in tears. Since I had cancer he could not give me estrogen, but he could give me testosterone. A little of that and I found out why guys are always horny. Holy crap, Batman! It normalized after a couple of days, thank goodness. I was also able to get a prescription for an insertable estrogen-releasing ring to bring all the girl parts back to health. It would not release enough estrogen to be a risk factor according to either doctor. My boyfriend didn’t notice it in there, so everything was back to “normal” soon. As normal as I could feel.
I felt like I had one “girl part” left. I was BRCA1, so I now need to have a yearly MRI and also a yearly mammogram and ultrasound to monitor my right breast. The doctor asked me to consider a prophylactic right mastectomy but another surgery? The first was so painful. I know that the chemo added to the pain…it really extended the healing process eight months. The idea of another surgery just scares the hell out of me. I have a 50/50 chance of developing a new cancer in the right side. That is why we monitor everything so closely. Maybe someday I will decide to do it. Not now.
The relationship I had went south, but I hung on out of guilt. More on that in a bit.
Before cancer, early in life I found that with each physical move I made, I could be whomever I wanted to be.
College was a chance to be another “me.” I could go to bars, drink, and have fun. Still no dates. This poor girl couldn’t find anyone until she was a senior in a five year program. He just wanted notches in his belt and tossed me aside, but at least I was on my way to many new mistakes. Adventure was adventure, painful or not. Seemed to be mainly painful.
After graduation I met my husband. I fell in love. Our relationship had its ups and downs. His three teenagers were very hard on me. I would never take that on again. Ever. Towards the end, my then-husband would attack me in the middle of the night, thinking he was showing “love.” I felt like a piece of meat. I hunted for affection elsewhere. It was a horrid mess. My dad died and I crumbled. He was my rock. It allowed me the freedom to leave. I won’t say I wasted 10 years. I have a wonderful step-kid (37 is still a kid in my book) who I can claim as mine. My ex is still a friend.
The next long-term relationship seemed better but it was not. I mentioned him above, the one who was with me during cancer. For a while, things were fine. I hung on out of guilt. I felt like he stuck with me, so I should stick with him. I was very unhappy to say the least. We tried all sorts of things in our sex life during the course of our 12 years together, but I felt like nothing we tried was enough. I had fun with most of it. It was an exploration into things that I realized I liked. One thing I knew I would not be able to handle was couples, so I let him know that was my “line in the sand.”
Although he helped me explore my sexuality in a broader sense and he stuck thru the cancer, I knew it had to end. We broke up a few times and got back together again. The end came when I was just too angry all the time. I found out about all the cheating with couples later. With all of our exploration and play, I was not enough. I was devastated. I felt like it must have been me. It was a blow.
Now what? How to date after that?
I felt like no one would want me. Dating with some scars and a potentially scary future? At 50-ish? How do I do that? I finally turned to the internet for dating. The challenge of a profile? It’s not like you put “hey guys, I like kinky sex but I had breast cancer” in your profile. What fit for me was putting it all out there very honestly. I am liberal. I don’t want to be a mom. I need an intelligent person. For f-ks sake, I am an engineer. I have brain cells. Chemo didn’t kill them all.
I did not put the cancer in the profile. If someone decides that they like me, then I will tell them in person. It works out to about the second date. Then you know that they like you as a person, but no one is invested in you too much that it hurts like crazy to watch them turn tail and run the other direction. But it still hurts. It is rejection. They are missing out. I have a lot to give but don’t have the chance to show it. Even though it was over 10 years ago. Even though the partners I have (and the current one who I did meet online) seem to think I am the best they have ever been with. Why? I have no idea. I just try to have fun.
Over the last 15 years I’ve started to experiment a little more (starting slow). It clashes with my upbringing. I was raised a good little Presbyterian. I got yelled at for taking off my PJ’s one hot night when I was little. My grandma told me to “stay clean” (and I know she wasn’t talking about bubble baths). I didn’t have dates. I wanted them, but I was an introvert and a nerd. No chance.
I found I like to be submissive in bed. I have to be strong all the time, so that is the one time I can let go.
I like light BDSM. A little bondage, spanking, choking, some pain, etc. I discovered through experimentation over the years that it is fun with someone that I trust. I don’t take it out of the bedroom. A date asked about calling me names in public. I told him I would f-ing kill him. No way. There is a place for that. I have limits. I demand respect. I am still learning and experimenting. We make it up as we go. As for safe words? When I say “no” it really means “no”.
My current partner has what I call “orgasms from hell.” They go on and on and on. I’ve never seen anything like it! He says I do that to him. Really? Me? Wow. Makes me feel good and almost normal. I don’t think he will run. He seems to think I look just fine, and considering I am able to help him have the best orgasms he’s ever had in his life, well, that is a pretty good incentive to stick around as long as things work out for us.
We are still trying things. I have some issues that we are working on. He is helping. For some reason as much fun as I have (as in the best ever) I have not been able to have an orgasm yet. Not uncommon. I am also allergic to sperm. I get all the fun stuff. At least condoms work for that.
The older I get the more fun I have. The more relaxed I am able to be, and maybe the less the baggage that was implanted as a child is able to affect me. The scars that were created through cancer are always going to be there. They do fade though. Once a year on the anniversary of the lump I might have a crisis. As long as someone is there to pick me up I get through it. Love and understanding helps.