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Saturday, April 7, 2012

Happy April 7th Day!

Today would have been my mom's 69th birthday. My mom hated her birthday (and really anything that caused people to make a fuss over her) so we called it April 7th Day instead. After losing my mom in 2006, April 7th Day was always tough until last year when I decided I would honor her on this day instead of mourning her. It's definitely what she would prefer!

So, today I am starting Unite Out Loud, a blog where I will share stories of inspirational women who have faced enormous challenges and tragedies with courage and strength. My hope is that these stories will encourage and inspire others in their times of need.

The idea for this blog came from my own experiences. My mom and three aunts all fought courageous, but ultimately losing battles against ovarian cancer. When my mom was diagnosed she tested positive for the BRCA gene mutation, which increases the chance of getting ovarian cancer by 40% and breast cancer by 60%. In May of 2007 I was tested for the gene mutation and learned that I also had it. Initially I was terrified, but I quickly moved into action to figure out what I could do to reduce my risk. I had already been participating in Northwestern University's Ovarian Cancer Early Detection & Prevention Program because of my family risk, which meant an exam, ultrasound, and blood test twice a year. My husband and I met with a genetic counselor and doctor at Northwestern to talk about my options. I could either be aggressive by surgically removing my ovaries and breast tissue, or less aggressive with regular screenings. If I went the screening route, in addition to the ovarian cancer screenings I had been doing, I would also need to do breast cancer screenings every three months, alternating between mammograms, physical examinations, and MRIs. I am a worrier by nature and knew I had to be aggressive. I felt like I was a ticking time bomb and needed to do something to diffuse it.

I decided to do a prophylactic double mastectomy which would reduce my risk of breast cancer by 90-95%. It was a drastic step, but the best choice for me. A few weeks after I decided to go with the surgery, I learned that my second cousin, who is the same age as me, had been diagnosed with breast cancer and was undergoing treatment. This only strengthened my decision to undergo preventative surgery.

I found a wonderful breast surgeon and plastic surgeon at the University of Chicago, who could do the removal and complete reconstruction all in one surgery, which was very important to me. I had never been in the hospital, let alone had major surgery and was very nervous about the whole process. Dr. Song's nurse put me in touch with a former patient to get a patient perspective. This is where I first experienced the immense power of other women's stories. Hearing her experiences and being able to ask her questions was extremely helpful and comforting. I began to seek out additional women who had been through similar procedures. My genetic counselor recommended an amazing organization called Bright Pink that is focused on young women at high risk.

After I had connected with women in similar situations, I felt more empowered than scared. I felt so lucky to have this information about my risks and options to reduce my risks. These were options that my mom and her sisters did not have. By the time I went in for surgery, I was ready! The surgery lasted 8 hours and went well. After hearing so many horror stories about hospitals, I was pleasantly surprised by the care I received during my two day stay. I would not describe the week following my surgery as the best week of my life, but it was manageable. I just kept focusing on the women like my mother who had and were currently fighting cancer, and knew that any discomfort I felt was nothing compared to what they dealt with.

I cannot fully express the impact that connecting with women who had faced similar challenges had on me. It not only alleviated concerns, but also helped me to feel like I was not alone. My experience would have been much more scary and lonely without them!

My hope is that this blog will help inspire and support anyone who is going through a difficult time. Even if the circumstances are not the same, I believe we can gain perspective and strength from the courage and experiences of others!

Please stay tuned to read about some amazing women and feel free to let me know if you or someone you know has a story to share!

12 comments:

  1. Happy April 7th indeed! What an amazing tribute to your mama and aunts and all the other strong women out there - like YOU! Your mama would be so proud of you.

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  2. Happy April 7th day! Thank you for sharing your story and providing a forum for other stories to be heard! Looking forward to following along.

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  3. awesome blog, Stacy! i'm so excited to read more stories of strong, inspiring women... like YOU! SO proud of you!

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  4. Thank you so much for the encouragement! So excited to get this thing up and running!

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  5. You are amazing and strong! Thank you so much for sharing your inspiring story of courage. :)

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    1. Thank you so much for the kind words! It sounds like you probably have your own inspiring story!

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  6. This is a phenomenal idea! I am excited to read more!!!!

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  7. Thanks for sharing your story! I can't imagine how scary that must have been for you (and I would imagine it still is). Also, sorry for the loss of your mom and Aunts. I'm glad you made the decision to get tested and treated right away. What a great idea to create this blog.

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  8. I also never knew the complete story of Erin's cancer. What a brave, strong woman you are, Erin. Your story is so moving and inspiring, thank you for sharing it!
    I am so happy you are 12-years in remission - keep fighting!! You have such a beautiful, you can just see the love in your childrens eyes :)

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    1. She is definitely a courageous inspiration to us all!

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