‘I could hear the fear in her voice. ‘They think its tongue cancer.’: Woman shares story of losing twin sister to tongue cancer to raise awareness

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“I miss you my sweet. That is how I always say goodnight. If I close my eyes tight enough, it’s almost like I can teleport to that moment. That blissfully ignorant moment when we were together and we thought that would never change.

Growing Up

My name is Rebecca, and I am a twinless twin. Twinless because my twin Vanessa passed away 10 years ago of tongue cancer. I can still see this movie start playing in my head of that life that ever so distant life. It is almost like a before and after. Before Vanessa, and after Vanessa. Growing up it was mainly my mom and my sisters. I had my twin and my older sister.

My parents had been divorced since I was 10. It was still happy. We still made memories. Vanessa and I were your typical twins. We were very close, but we did have our fair share of fights. Silly fights but we always made up. We had bunk beds, yet we slept in the same bed. One of the first dreams I had of Vanessa that I remember was when we were in first grade. I actually had a dream of her dying. It was as real as the words I am typing. I knew at that young age we could never live without each other, and yet here I am. How did this happen?

young twins standing for photo
Courtesy of Rebecca Bencal

Vanessa was such a free spirit. We were born 2 months early, and she struggled with a slight learning disability, but that never stopped her. Ironically, she was extremely shy when we were growing up. So different from how she was as an adult. I was the go-getter, and she was the ‘I need someone to do it with me.’ Back then that was so frustrating to me. Today, what I wouldn’t do to have her hanging with me all day.

One of the main reasons I didn’t fathom going away to school for college was I couldn’t imagine life away from her. I met my husband in high school, and he knew he was always going to deal with her too. If we went away with our significant others for vacation near our birthday, we either came back the day before or left the day after our birthday. We never spent it apart. For 36 years, we shared our birthdays together. I suppose now too. She has never really left me. I get her signs all the time.

black and white photo of twin sisters
Courtesy of Rebecca Bencal

Pregnant Together

Life had been moving somewhat okay. We had an aunt pass away at an early age of breast cancer, and shortly after my aunt passed away, our grandmothers had passed of cancer. It was almost an inside joke. Every symptom, every ache had to be cancer. Fast forward to age 34. Sure, we had experienced losing family members but who hadn’t. We were no different and we were figuring out how to keep our heads held high. Little did we know we hadn’t even begun to experience the real trials of life. What we thought tested us before hadn’t even made a dent into what kind of strength we were going to need. Sometimes when I tell the story it doesn’t seem plausible, but it was. It was our life.

Vanessa and I had always wanted to be pregnant together. I was married with two children and thought that was probably it. Vanessa had married her junior high sweetheart. Things were eerily good. I knew not to always believe that. But the good news kept coming. I had found out I was pregnant with baby number 3, and a month later Vanessa found out she was pregnant with her first child.

This was such a twin thing to do. I was coming to terms with baby number 3 and was so excited to become an aunt too. A godmother, in fact. That was part of our twin promise to each other, to be godmothers to our firstborns. She was in the room with me when I had my son. She was the one who yelled out, ‘It’s a boy!’ We hadn’t known what we were having. I will always hear her voice in my head yelling that. Ironic, considering tongue cancer took her voice away.

woman with newborn baby
Courtesy of Rebecca Bencal

At about 3 months pregnant for me, we were throwing a birthday party for my daughter. Vanessa had shared that she had a spot in her mouth that she had for a while, and it was starting to bother her. She was going to a doctor’s appointment the following week for this white lesion on her tongue. She had worked for a dentist and had tried to get some answers, but unfortunately, not a lot of people wanted to believe it could be anything serious because she was only 34. How could a 34-year-old have cancer in her mouth?

Little did we know at that time oral cancer was on an exponential rise. It had been sitting in her mouth waiting to destroy anything in its path, but it had never had a free spirit like Vanessa. Even this most invasive cancer wasn’t going to bring her down. She had gone to that doctor’s appointment the same day I had a big second-trimester ultrasound.

Tongue Cancer

I was in my 13th week of pregnancy, and Vanessa was just 4 weeks behind. I had been sitting in my appointment waiting when my phone rang. It was Vanessa. She knew I was here,  and I knew she was there. I had to answer. ‘What’s the matter?’ I answered frantically. I could hear the fear in her voice. ‘They think it’s tongue cancer.’ I was dizzy. I couldn’t wrap my head around what she was saying. I ignorantly told her they didn’t know what they were talking about. I knew enough to know they hadn’t even done a biopsy. Nothing was certain.

woman in hospital bed with newborn child
Courtesy of Rebecca Bencal

I assured her everything would be okay. I lied and told her everything would be okay, but for some reason, I knew that it wouldn’t. I proceeded with my own doctor appointment only for them to tell me on that same day she was told she had cancer, I had lost my baby. I walked down to the waiting room where my other sister had been watching my two children. I cried in her arms as I told her I had lost the baby and Vanessa probably had cancer. I feel like I cried for weeks.

On the same day, she had her biopsy to confirm what we already knew. I went in for a d and c. A week later we were told Vanessa had stage 4 squamous cell carcinoma of the tongue. We had never even heard of that. When we started doing all this research on how we were going to get her better, there was no good news. There just weren’t a lot of people with this type of cancer. She was also still pregnant. The more I dove into my faith, I realized that I wouldn’t be able to care for her the way I wanted to with a newborn. I just wanted her to be okay.

When we did find a doctor to care for her and her unborn child, time was certainly of the essence. There was none to be wasted. Vanessa went through 3 rounds of chemo while pregnant and had a major surgery on her tongue with a neck dissection to remove her lymph nodes, and then she had her son, who was born at 29 weeks so she could start radiation with chemotherapy. When I tell you how much my heart ached during these days, it was palpable.

woman with cancer feeding her baby in hospital bed
Courtesy of Rebecca Bencal

This was my twin. I could almost feel her pain literally. It was that deep, yet she always smiled. No matter how many sh**ty things they told her, she kept us laughing. She was in a battle with the toughest opponent, and she made it look easy. If that was even possible. through those lenses, she was showing us that maybe it was possible to live with this. Boy was I wrong. I was selfish thinking with my own heart.

A Short, Happy Life

She had a new baby and a new husband. We wanted her to fight for those things. She wanted to fight for those things, but soon we could see something was changing. She was getting so sick. She eventually had a tracheotomy and was told she needed a full glossectomy (tongue removal). We didn’t even know they had those kinds of surgeries, but they did, and the only chance she had was this surgery. After many opinions, and a lot of praying she had the surgery. It was over 12 hours. She no longer had the ability to talk or eat. She was now permanently on a g tube. yet she was still her smiling self. We could all see her pain though. She was now on morphine, OxyContin long term and short term, she had a fentanyl patch, and eventually methadone. We sat with her. We had to do everything for her. We could see she was getting so tired, so thin, so sick. we had a hospital bed put in her house, we had oxygen we had it all.

Cancer had taken it all, but it hadn’t stolen her spirit. It hadn’t stolen the love we shared for each other and every family member who loved her. It taught all of us so much about how life isn’t guaranteed. We hear that, but it doesn’t set in until you see your twin on that bed, with no life left inside of her. The hours we had spent, she had spent trying to get better. In the end and even today, it was about the little moments we had. The sweet moments with her son and husband together, that smile she shot across the room. That fuzzy blanket she threw over our shoulders as we lay with her, it was that pause she took to rub her precious cat, Lady, who was loyally at the foot of her bed, it was the coffee she made for everyone else even though she couldn’t drink it or even smell it.

twin sisters smiling together
Courtesy of Rebecca Bencal

She had once said to me that she would rather live a short life happy than a long life sick. I knew she was feeling what I had so wanted to get out of my head. Was she not going to make it? I loved her that much to let her go, but I didn’t know it then. I didn’t know she was ever going to leave me. She was forever my twin, and I was forever hers.

On a cold night in December, she took her last breath. I was supposed to go there after work, but we had chemo early in the morning so I went home for a bit. In the middle of the night, my brother-in-law told me to rush over. ‘She was passing.’ She bled out of her trach and died in his arms with her 2-year-old son sleeping in the next room. I suppose my brother-in-law was the one who was supposed to see her that way. I don’t think I would have survived that sight. I might have died myself that night of heartbreak.

Those days, even years after, seem like a big blur. I somehow found the strength to channel my grief into oral cancer awareness and writing. In the beginning, I found myself checking my legs often to make sure I was still standing. It hasn’t been an easy grief journey, but what I can say is I allow myself to have those bad days, to miss her so much that my heart will ache for hours but also to have the capability to think about all the laughs with her too. She is still my twin and I am still hers. I am still standing and so can you. I miss you my sweet. More than all the leaves in the trees. More than all the stars in the sky.”

twin sisters sitting together
Courtesy of Rebecca Bencal

This story was submitted to Love What Matters by Rebecca Bencal of Chicago, IL. You can follow her journey on Facebook. Submit your own story here, and be sure to subscribeto our free email newsletter for our best stories, and YouTube for our best videos.

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