Home Breast Cancer How my high-risk diagnosis for a breast cancer gene revived my marriage

How my high-risk diagnosis for a breast cancer gene revived my marriage

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My husband, Tom, and I have been a couple since we were teenagers. I knew from an early age that I wanted to spend my life with him. But the obligations and hurdles that creep up on us as adults – work, parenting, health issues, individual goals – began to change our dynamic, and at times, complicated our relationship.

Lilith and Tom Costa got married in 2010.Courtesy Lilith Costa

By the time we hit our 30s, our list of responsibilities felt endless. The challenges life threw at us required so much of our attention that we unknowingly began to neglect our relationship.

Tom and I are no strangers to medical hurdles: I’ve suffered from autoimmune issues for 10 years and had a miscarriage before we finally conceived our second child, Thomas. But in 2015, when I was diagnosed with a gene linked to hereditary breast cancer while five months pregnant with him, we both hit our emotional threshold.

The news had me wrestling with my concept of what a strong woman was supposed to be. To me, strength meant sucking up my troubles, grinning and barreling through whatever life throws at you without shedding a tear. I thought as a strong woman, I wasn’t allowed to suffer from sadness or any mental illness.

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Most people in my family would sooner accept me believing I’m psychic before accepting an admission of sadness or depression. As a strong woman I don’t get sad, I get focused. Unfortunately, after learning I had yet another health hurdle, that’s exactly what happened – I became depressed and suffered in silence for a year. I resented my husband’s lack of questions and emotions. I wanted us to cry together, and that meant I needed him to change who he was, cry first and gain the superpower to read my mind.

Tom dealt with his own ideas of what a strong, masculine character should look like. That image did not include talking about feelings, admitting fear, stress or sadness. It was easier for him to push it down and scowl through his problems until they bubbled up in anger over insignificant things.

But after a few women in my neighborhood with a similar gene passed away from breast cancer in 2016, we realized we could no longer ignore my diagnosis. I felt it was a warning of things to come, so we took a proactive approach to saving my health.

In early 2017, Lilith Costa undergoes a prophylactic double mastectomy and reconstructive breast surgery after testing positive for a hereditary breast cancer gene.Courtesy Lilith Costa

In early 2017, I underwent the first of several surgeries to reduce my chances of developing breast cancer. It included a double mastectomy, removal of my uterus and fallopian tubes, then a hernia repair. After that came breast reconstruction with a deep inferior epigastric artery perforator (DIEP) flap procedure.

While the surgeries were successful, the process made us face the neglect that plagued our marriage. I found myself bedridden and unable to interact with my children. I became isolated from my family and friends, unwilling to admit my loneliness or ask for help. I depended on my husband completely while I recovered and seeing him struggle at times with the kids left me with baseless guilt. I felt I had put my family through more than they deserved.

Lilith Costa recovers from a prophylactic double mastectomy with her family in Rockaway Park, NY.Courtesy Lilith Costa

My husband immediately took a leave from work so he could manage all the household duties that came with caring for a 1-year-old, a 3-year-old and a debilitated wife. The sudden change made his stress level soar. And though he never once complained, the smile on his face that always lit up a room had faded away.

We soon found ourselves arguing over small things, blaming each other for what was affecting our relationship. I remember seeing pictures of my friends together on social media, wishing I had a friend sitting beside me. We had drifted so far apart that I couldn’t see my best friend was right there beside me.

I vented to my father, one of the only people I allowed to see my vulnerability. “My husband doesn’t care,” I told him, “he’s always frowning and angry.” But my father told me that my husband was equally suffering in silence. He reminded me of how stressed I got caring for two kids under five, how isolating it can feel without other adult interaction, and that seeing me struggle hurt Tom more than he’d ever admit.

It took another heated argument one night to realize my dad was right. Every word we used to cut each other down reflected how deeply we were both hurting, holding back tears.

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Did I really need care with a smile from a man who emptied my drains, changed my bandages and washed me because I couldn’t lift my arms after my mastectomy? Did I want to win the argument or fix our relationship?

Tom frowned at me. “Oh, so you have nothing to say?”

“I love you,” I whispered.

His head tilted. “Are you mocking me?”

“No, I’m sorry,” I said. “I may be the one in physical pain, but we’re both emotionally struggling and instead of admitting it to each other and talking about it, we’re taking it out on each other. I don’t want to do that anymore.” Thankfully neither did he.

Lilith and Tom Costa celebrate a family member’s wedding with their two children in October 2020.Courtesy Lilith Costa

At times life pushed us apart, but because of my diagnosis and surgery we walked away with a new perspective. It didn’t matter who was right or wrong. We had to love each other enough to face our flaws. Strength doesn’t mean pretending to be OK. For us it meant facing and fixing our issues, asking for help, accepting help, learning to lean on one another and never taking each other for granted. Life may keep throwing us hurdles, but now we know the best way to overcome them is to face them together.

https://www.nbcnews.com/know-your-value/feature/sickness-health-how-my-high-risk-diagnosis-breast-cancer-gene-ncna1249007

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