Being a part of a small online support community of those affected by AFE creates a bond that defies distance and sometimes even language. Members often share very personal feelings that may not be understood by those who’ve not walked in their shoes. There is no judgment; only empathy, support, and encouragement. It’s also common to see posts about health concerns and asking if others have experienced them as well.
“I remember a post a few years ago in our support group for AFE survivors asking if others had been diagnosed with breast cancer. As members started to respond ‘yes’ my heart sank for these women and their families. They had already faced so much in their brief lifetime”, says AFE Foundation founder Miranda Klassen. In honor of breast cancer awareness month, we asked a few of our families to share about facing two very challenging health crises, an amniotic fluid embolism and breast cancer. They are the rare and the brave.
The Gorney Family
Ashley, and her husband Jerad, have allowed us to share in their journey. It has included the highest of highs when they welcomed their son after Ashley had suffered an AFE during the birth of their daughter, and the lowest of lows, when a year later Ashley was diagnosed with breast cancer.
Ashley is brave beyond measure. Having nearly lost her life to an AFE during the birth of her first child, she and Jerad made the difficult and emotional decision to try for another child. Little was known about subsequent births after an AFE, but evidence showed it was possible and that there were no reported incidences of recurrence. After they shared their news with us, we patiently waited and then celebrated when Ian made his entrance to the world. The delivery didn’t result in an AFE but did come with again some unexpected challenges.
A year later, while attending “Dig Pink”, a breast cancer awareness Volleyball event, Ashley listened to the statistics shared that night. She realized it had been some time since she had a breast exam with having been pregnant and breast feeding. Later that evening Ashley did a self exam and found a lump. A follow up with her doctor confirmed it to be breast cancer- invasive ductal carcinoma.
We asked Ashley a few questions about how her experiences.
You have gracefully battled the unknown and poorly understood (AFE) to the known and well-studied (breast cancer). How are the two experiences different?
Honestly, I think the two events, the unknown AFE and the known breast cancer, have more in common than they don’t. True, AFE is unknown to most people, there’s not a lot of awareness or research and there’s nothing that we know of right now to prevent it. But, it still something that once you’ve experienced it, you deal with one day at a time. You rely on your doctors and your support system to help you navigate through an extremely tense and trying time, and hope that in the end everything works out. The biggest difference between the two, (which the website and facebook groups helps to alleviate), is the sense of loneliness that comes along with an AFE. With breast cancer you have so many “sisters.” Everyone you meet has some sort of personal experience with breast cancer, and it’s so reassuring to hear their stories. But with AFE, if it weren’t for the AFE Foundation and the support group on Facebook, it’s a very real possibility that you would never in your lifetime meet someone else that can relate to what you’ve gone through. Even if you’re not a vocal participant in the support groups, it’s so comforting just being able to connect with others in that small way.
Did your AFE experience have an impact on how you managed the diagnosis?
My AFE taught me to be more observant of my own body and to be very open with what I noticed with my spouse and doctors. Because of this, I immediately called my doctor when I felt the lump in my breast. Before, I may have put if off and just chalked it up to a clogged duct after breast feeding, or put off calling the doctor until later, like so many people do. I’m much more aware of my body and ready to advocate for myself now.
How has life changed?
As far as how life has changed…Our every day lives have changed tremendously, but not all in bad ways. A year out, I was diagnosed on October 7, 2015, and I’m getting close to being done with the big stuff. I’m half way through radiation right now, and then will just have to wait and see what surgery I’ll have and when. So, right now it’s the day to day appointments that have changed our routines the most, but we’ve had so much help. Family and friends have done so much for us, so we’ve been able to keep the lives of our kids as normal as possible. We had over 4 months of meals prepared for us by friends and colleagues while I was going through chemotherapy. That was huge. We were able to use the little energy we had left at the end of the day to play games and read stories with the kids instead of cooking. That was worth so much to us.
Ashley has turned her attention to sharing her story so that other women know the facts and take their breast health seriously. She also has kept her wonderful sense of humor- as can be seen in her hilarious but honest mammo-grahams cookies- a gentle but important reminder. Be sure to tune in this Sunday, October 23rd to FOX Sports (in the U.S.) and watch Ashley toss the coin at the Kansas City Chiefs vs. New Orleans Saints game!
In recognition of breast cancer awareness month, we encourage you to do a self-exam, learn about early detection, or schedule a breast exam or mammogram. Please join us in honoring Ashley and the many AFE survivors touched by breast cancer. They may be the rarest of rare, but they are undoubtedly the BRAVEST of BRAVE!