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Fertility, HomePage Slider, Inspiration, Lifestyle, Mamahood, Pregnancy, The Journey

The Isolation of My Pregnancy Journey as a Cancer Previvor & Finding My Community

Allyn Rose | November 6, 2020

I’m pregnant. It’s still strange to say that out loud. I’m not sure when it will start to feel “real…” I think I feel that way because my road to this pregnancy was nothing close to resembling “conventional.” My husband and I underwent IVF (in vitro fertilization) with PGT (preimplantation genetic testing) to conceive our baby – a process that started for me when I was 7 years old. You might be thinking: “How/why would you start planning an IVF pregnancy at age 7?” Well, I come from a family with a sad legacy of a rare X-linked recessive disease. By the time I was born, I had already lost 3 uncles and countless other family members before them to related health conditions. Because my mother was a carrier, I had a 50% chance of also carrying the gene mutation and the ability to pass it on to my future children.

When I was 7 years old, my mother took my younger brother and I to be gene tested. Fortunately, my brother’s results were negative; but mine came back positive. My mother never “sugar coated” anything, especially when it came to important things like our family health history. She sat me down after receiving the results and explained (in terms a child could understand) what carrying this mutation might mean for me. As I got older, that conversation evolved, but my mother remained adamant that I be aware of its implications in my life. Sadly, those discussions between us ended shortly after my 16th birthday when I lost my mother to metastatic breast cancer – – a disease which had also claimed the lives of my grandmother and great aunt before her. In the last letter that my mother wrote to me, she urged me to consider IVF with gene testing when conceiving children to hopefully remove this mutation from our family tree. And almost 16 years to the day after her passing, I had my first embryo transfer. That transfer was a success and I’m currently 20 weeks pregnant with a Wiskott Aldrich syndrome-free baby.

After getting that positive pregnancy test, a big part of me thought that the “hard stuff” was over. I spent months injecting myself with hormones, having eggs retrieved and waiting for test results. I now had the storybook ending – we were pregnant! I was going to be a mom to a HEALTHY baby! But as the weeks went by, I slowly realized how isolating pregnancy can be. At first, I worried about my friends in the IVF community who were still struggling to conceive. Would they be happy for me? Was it appropriate to share my success? I thought about the women who had recent miscarriages. Would my announcement be triggering for them? What about my friends who weren’t ready for children yet or didn’t want them at all? Would they think that I was no longer interesting – that I had moved into the “boring mom” category? I was one of the rare few who didn’t experience morning sickness or other bad side effects. Would other pregnant women resent me for that? I really struggled with who to turn to.

If I ever shared that sentiment, I was immediately asked: “What about talking to your mom?” “What was her pregnancy like?” It was a constant reminder that I wouldn’t have my mom here to help me, to give me advice or to even learn about her birth experience. On top of that, because of my family’s history of breast cancer, I’d undergone a preventive double mastectomy, removing all of my breast tissue and milk ducts to prevent cancer. This meant that I am no longer able to breast feed. And it seems like wherever I look, it’s broadcasted “breast is best!” So on top of the isolation, I now feel like my baby is starting life at a disadvantage – and IT’S ALL MY FAULT.

Am I starting to sound crazy yet? I blame it on the pregnancy hormones.

This is my very long-winded way of saying that every pregnancy is different and it’s normal to have these feelings. What I’ve learned these last 20 weeks is just how important it is to have someone to share those feelings with. And it’s okay if you don’t have a mom tribe already around you – you can build your own! All you have to do is look around you. Just because a friend may not have children, it doesn’t mean they aren’t interested in your journey. Join a support group on Facebook – search a mom hashtag on Instagram, reach out to that girl you knew in high school who you haven’t talked to in years but is crushing the mom game. You’d be surprised how many people are ready and willing to help support you. Just last week I received a letter in the mail from my sister-in-law’s mom who said that she hasn’t “been pregnant in 25 years” but that she wanted me to know that she was there to talk if I needed it. Things like that have helped me throw away the notion of “what’s normal” and focus on what makes my experience unique. I suggest you do too.

Allyn Rose: As a 24-year-old Miss America contestant, Allyn Rose made headlines across the globe with the controversial decision to undergo a preventative double mastectomy after losing her mother, grandmother, and great aunt to breast cancer. Allyn’s story inspired celebrities like Angelina Jolie and a new generation of women to take charge of their healthcare choices. Determined to encourage other women to know that their scars are beautiful, Allyn boldly became the first woman with a mastectomy to model for Sports Illustrated Swimsuit. As the carrier of a rare genetic mutation, Allyn underwent IVF treatment with Shady Grove Fertility to eliminate it from her family tree and is now pregnant with an IVF miracle. She is the founder of The Previvor, a 501(c)(3) non-profit women’s health platform, which serves as a resource for women undergoing mastectomy and the creator of the #SelfExamGram, a social media movement encouraging women to perform a monthly self-breast exam.

Follow Allyn’s journey on Instagram & YouTube!

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