Even on the warmest summer days I feel like I’m carrying around an ice pack on my chest. With implant reconstruction after mastectomy, too little fat is left to insulate and keep the implant at body temperature. This means that in the winter or in air conditioning, in a pool or in the ocean—even on a temperate day when the wind blows—I am always cold.
In March of 2012, an ultrasound revealed a small tumor in my left breast. Seven years earlier, I watched my mother die after a long struggle with invasive metastatic breast cancer. I had been getting regular screenings because of my hereditary risk ever since. A core needle biopsy determined the tumor was benign, but it just happened to be located in almost the exact same spot as my mom’s primary cancer. This detail, though medically irrelevant, weighed heavy on my mind. I had just turned 30 and had two young children. Finding a tumor, albeit benign, took me back to the dense emotional fog I felt after the loss of my mother. I knew I had to become my own healthcare advocate, not only for myself but for my kids as well. Ultimately, I decided that my best option for a happy and healthy future was to have a preventive bilateral mastectomy and reconstructive surgery.
As I reflect back on my decision, there was only a single moment—one that I grossly under-considered—where I thought about how my reconstructed breasts would look and feel as I healed and eased back into my normal life. The relief of taking control over my healthy future always far outweighed the body image issues that, at the time, seemed peripheral to the entire surgical process.
Then the moment came when my surgeon asked pointedly, “What if you are never happy with how the reconstruction looks?” My initial reaction was outrage—I was having this procedure so I could future-proof my body, not so I could look great in a bathing suit! Of the many talks I’ve had with my surgeon, this thirty-second discussion is the only one I recall pertaining to the long-term impact on my body image. We didn’t even touch on the topic of sensation.
Healing after mastectomy with tissue expanders was a journey through the entire spectrum of uncomfortable sensations. Acute postoperative pain gave way to aching, itching, numbness and shooting nerve pain that shocked me out of sleep for almost six months. I experienced an enormous amount of relief with when my expanders were exchanged for implants, which thankfully healed quickly.
With healing began the start of a new journey: becoming myself again. I had accepted the most decadent amount of help from my family and friends. As a single mom of a two and four year-old, I needed so much. After the four-month wave of loved ones cycling in and out of our home, being alone again was cause for pause. This experience changed my identity. People saw me through a different lens, and I saw myself anew, which was both wonderful and awful.
The peace of mind regarding my healthy future far outweighs the persistent body image issues that accompany waking up in a new body that looks and feels very unnatural. There are moments (when I’m shopping for bras, when I’m being intimate, when I catch a glimpse of my naked body in the mirror after a shower) where the din of my nagging inner voice is almost impossible to quiet: you are deformed, you are scarred, you will not find a partner who loves you and understands you. These moments are universal, I think, as we all have feelings about our bodies that ebb and flow with aging, weight gain, weight loss, or even our moods. For me, I think it’s perhaps the abruptness of a surgical alteration that heightens the frequency and significance of these feelings.
In my intimate relationships, even though I’m very forthcoming about my experience, I’ve struggled to communicate how I feel physically and express my emotional needs, which—much like my body—also feel new and weird. Repeatedly, I find that I lack the right words to clearly describe how I want or need to be touched—or even to explain in a basic way the sensation of being touched (even the gentlest touch sometimes feels terrible or distracting).
I struggle to articulate their role during sex and how I generally want my breasts to be treated or talked about. I believe there are partners who are patient, willing and even excited to figure this out with me, but I’ve yet to fully realize this with someone. However, I am hopeful about finding this person, and I am committed to getting better at talking clearly about my needs.
This emotional journey has gotten better with time. At times, I’ve wondered if my surgeon was right, but for the most part (with the repeated kind words of many loving friends and reminders to myself that my value does not come from how I look), I’ve moved past those feelings.
Quite unexpectedly, the one outcome that continues to plague me is the feeling of constantly being cold.
I am thankful to be healthy and alive. It seems almost crazy to complain about being chilly. However, dealing with this constant coldness has had a very real impact on my daily life. I rarely play outside in the winter or swim in the cold ocean with my kids anymore. I’ve sat at my desk with a hot water bottle under my shirt and worn glove warmers in my bra (I strongly urge you not to do this, as I was burned!). During the winter, I sleep wearing multiple layers of clothes.
As I’ve connected with other women who have had this procedure and learned that I am not the only one with this discomfort, I am both comforted by the validation and driven to find a solution. Connecting with so many amazing women who have been willing to candidly share their experiences makes me want to provide a safe space for them to share more, and to build a supportive community where women are empowered to thrive and adapt to their new normal. Above all, a centralized location where women can discuss their shared experience, whether they have had mastectomy and reconstruction or have been affected by cancer and are experiencing changes to their daily and intimate life as a result of their treatment. The first step on the path to solving this problem is to start a conversation.