Say hello to this week's Sexuality Superhero, Stacy Routhier. Stacy's profile is a little different than the Sexuality Superheroes we usually feature. Stacy's blog talks about her experience with cancer, and how it's affected her marriage, sex life and other important pathways in life (both good and bad). Read Stacy's story below.
How has your experience with cancer affected your marriage? (Either good or bad, or anything at all.)
Being diagnosed with DCIS commonly known as stage 0 breast cancer at age 36 was something that we weren’t ever expecting to deal with. We knew that this was going to be a long journey that required sacrifice, patience and positivity. Most married couples know that these are the traits of a healthy marriage, but I think sometimes we forgo these traits when life takes over and forces us to shy away from these desired traits. We knew that we really had to work at keeping these three traits top-of-mind now for the well-being of us both. Grant and I have always been really close and at the time of my surgery we had been married 12 years. He was right by my side during the whole experience. I knew I was in good hands physically with my doctors, but emotionally with my husband. I think the experience has brought us closer together as we have never had anything quite like this on our 12-year path of marriage. When people ask us what keeps our marriage working so well, we always look at each other, smile and almost simultaneously say “communication!” We were both communication majors in college so maybe that’s why it is our go-to commonality, but when cancer crept into our bedroom, our communication failed.
My choices were many weeks of radiation and five years of an oral treatment for this stage of cancer. I have a strong history of breast cancer in my family, and for many other reasons, I chose to have a double mastectomy with reconstruction. Knowing that the whole reconstruction process could take about a year and that I would have months of a skin stretching tissue expander on my chest prior to implants, we knew it was a long road. An area that the doctors don’t share with you is the emotional aspect of your decision and how it affects your personal life, especially in the bedroom. I remember thinking that it was odd that there wasn’t an option to talk with a therapist or a discussion group dedicated to this very topic. Even the first step of telling me my test results was done on a Friday afternoon from a nurse on the other line while I’m sitting at my desk at work. We only got to see a doctor that day because I insisted I speak with someone in person before heading into the weekend. I was assigned a doctor while my husband raced from his work to come pick me up at mine. We finally get to meet with a doctor who read off my options like she was writing a prescription and handed me a huge three-ring binder full of information for Stage 0 to hospice care! The routineness of it was was appalling. I understand that I had less of a life-threatening stage, but to someone who thought they were healthy and hearing the “C” word, really freaks you out.
Fast forward to being a few months into my mastectomy reconstruction, it was an unspoken rule in his head that sex was taking a back seat until I was ready...but we never had a discussion about it. According to my husband, when we looked back at this difficult time in our lives, he said that sex took a back seat because he just wanted me better. To him, sex was not an option, and later told me that he left it up to me to initiate. My physical body changes were never thought in his mind and that he was more worried about me mentally. He was so hyper-aware of being “that guy” with flirting and innuendos. In his mind, was going to have to initiate it. Right after my surgery, we never really discussed our new sex life so I second-guessed myself and thought that he must not be interested or turned on with my post-mastectomy tissue expanders in prior to implants...or maybe he found them as a turn-off. When we did make love post-surgery, I would straddle him on top while he laid down so he would be looking up at my breasts. I remember thinking, "lock eyes with him so he doesn’t look at them” (my breasts). Not only because I was self-conscious, but I knew that HE knew I was self-conscious and that he was probably trying his hardest to not look.
The mistake I made was assuming those thoughts, and not straight up asking him how he felt. I think that our own self-criticism comes from assuming what other people are thinking when they aren’t thinking about those things at all. I should have spoken up and asked what he thought or I should have let him know that I give him the green light to come home and sweep me off my feet and spend the rest of the night in the bedroom. Neither of us are mind readers as much as we wish we were. My strength through everything was a turn on, he says.
What are some great takeaways from your experience with cancer?
A mastectomy affects both people, not just the one who went through it. You think you know somebody or love somebody until there is an event such as cancer. For some people, it drives a wedge between their relationships. It causes problems and even resentment. You go into a relationship expecting x, y and z, whether the person knows what those expectations are or not. But, something like this turns everything upside down. For us it did the opposite. We circled the wagons and we approached my care and everything else as a team, where prior to this event, trying to get us to decide where we’re going to dinner was an argument...but when it came to this life event, there was no screwing around. It changed our relationship to realize that if we can get through that, we can get through anything.
I left my bra on for a long time after my mastectomy because I didn’t feel confident being fully exposed, especially without nipples. I remember pre-mastectomy being self conscious of not having a good size set of boobs so I only wore push-up bras. Now that I have Playboy-like boobs, I still feel self conscious even though it is what I thought I always wanted. Go figure.
What is your most important piece of advice that has the potential to revolutionize relationships?
Communicate throughout the whole process with each other. If a woman is reading this and struggling with the same things….go shopping for some sexy lingerie. Get a bunch of styles and colors and keep your new lace bra top on! He will still find it sexy and it may even bring out a different side of you. It almost gave me a feeling of starting over with a new sex life. We tried out more fantasies. I dressed up in the bedroom more...leather corsets to lacey red numbers. Be creative and don’t make the focus on your breasts. I also got a pretty good size tattoo on the side of my breast so it forces me to look at my naked chest a lot. That seemed to have helped me accept it more as my new norm. There is no nurse or doctor that is going to discharge you from the hospital by showing you how to change your bandages on your removed breasts while they heal and say, “oh, by the way...be sure to talk about the first time you have sex and share with your partner when you’re ready. These are things that are left to be discovered and figured out on our own. That is the part I want people to take away from my story. I am a planner. I knew every aspect of what they were going to do to me in my surgery. I knew exactly what to expect every step of the way...but not one website, book, or someone I spoke with, guided me through the relationships of the people I love and how it would affect me and the people around me. Most importantly, my partner. By shedding light on these sometimes unspeakable truths, I hope that people have an easier time going through something as tough as a double mastectomy.
What do you do to decompress and take care of yourself given the experience you have gone through?
I have the ability to get medical massage to help prevent lymphedema. She uses myofascial release. It’s not exactly a Swedish massage but it’s something! What centers me and makes me feel good is helping others. A phone call from a friend of a friend who just got diagnosed..and based on the sharing of my situation wants to talk with me. It gives me pride to talk about my situation with others. I openly talk about my experience and even make fun of parts of it at times. I don’t want pity. I like teaching myself new things. I’ve started listening to more podcasts instead of music in my car. I figured I could learn something because I have always been better with audible learning than reading. As much as I like being alone for a few hours to do whatever I want like paint my toenails or try out a new make-up look, I LOVE being with my husband. When we are together doing things, I don’t worry about anything. We call it the “bubble” when it feels like it is just him and I in this universe in that very moment.
What do you want people to know about your work from your blog?
I want people to dig and do a little bit of self-discovery through being inspired by the stories of others. My frustration with our healthcare system and how routine cancer has become really frustrated me. Each person is not a one-size-fits-all, and I felt from the very beginning that I was treated that way. I try and imagine how it would of went if the hospital team offered me a woman to talk to who had been through my very stage, or even taken three quarters of the three-ring binder out so I could focus on my stage instead of a one-size-fits-all binder that only left me feeling more scared and overwhelmed. My goal is to bring awareness to the things that they don’t talk to you about when you go through such traumatic experiences like cancer. How to handle questions from people at work, how to handle it when people think because you didn’t need chemo that you don’t REALLY have cancer. How to handle the psychological changes in your relationship and offer ways to work around it. My hope is that people read it and feel inspired to ask more questions, have the tough conversations before treatment or simply contact me just to talk! So many people read my story and commented to me how they never really looked at a situation like mine through such a different light. The conversations in my head were spewed out on my posts for all to read. Only the things which most people would think are private “deep shower thoughts” were what I chose to write about. The unspeakable truths that we are all just expected to go through in silence and appear to be brave. Many people left Facebook comments to me saying how I really write like I talk, or that it sounded like I was inside their heads. That was what I was trying to convey! I didn’t want a story that was just a step-by-step journey through cancer, but a true reveal of the inner voice. If you read it, you may even see spelling mistakes or incorrect grammar. I wrote from the heart and my inner voice. I wasn’t writing for a book or publication. It’s real and as raw as it could be.
Where can we learn more about your work?
My blog started from a private Facebook Group for my family and friends so I could update them on my journey after I was diagnosed. I replicated it on a blog site so non-Facebook users could get access or if someone wanted to share my story to a friend. My blog can be found at www.stacyshopechest.weebly.com. I am hopeful that people can read it from the beginning about my journey as it is a raw, and real account of events throughout. Not only with the mastectomy process and recovery, but my mental journey.
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