Up until this point I haven’t spoken a word of this on my blog. Heck, I’ve only talked to a handful of people about this in “real life”. I know myself pretty well, and I should have seen this coming. I only have two coping mechanisms: Freak Out Mode which includes hours of research & stress and Avoidance Mode… pretty self-explanatory. When it comes to the BRCA breast cancer gene testing I chose the avoidance route and today the wall I built; to avoid my emotions, came crashing down.
Let me begin with a little family history….
I can never remember a time in my life when I didn’t assume I would one day face this disease. Cancer has always been a part of my life. My grandmother and her sisters have all battled cancer, and breast cancer was often a topic of conversation in my house. When I visited my grandparents when I was about 12 I learned how to do self breast checks (thanks to an American Cancer Society shower hanger in my grandmother’s bathroom). Breast cancer was never a term that scared me because I had heard those words so many times before. Also, everyone I knew that received the diagnosis had survived, which makes it a lot less scary. Sure the sickness, pain, and even hair loss were scary, but dying that’s scary (yes, even as a Christian I have a fear of dying from cancer).
Last year I experienced loss and it changed how I viewed breast cancer. I lost two family members both from breast cancer. Both fought so hard and both had experienced remission and then they were gone. When my Mother-In-Law passed away last September it was a blow none of us were prepared for. She went from (what we thought) was completely healthy and healed, to someone who couldn’t remember words she had just spoken to me a few seconds before. I have never in my life seen anything as scary as what happened with her. She was given a clean bill of health, she was going back to work, she was growing her hair out and visiting us. Then she got sick (what we thought was the flu) and was gone a month later. My mother in law Beverly died last September of brain cancer caused by her breast cancer and I still feel like I’m in shock.
After my mother in law passed my mom decided to get BRCA breast cancer gene testing done. I had considered it before but it’s not always covered by insurance so I hadn’t taken action on it. My mom got her results and she tested positive and is a carrier of the BRCA 1 gene mutation. When I found out I was scared, but when I saw how scared she was I flipped the switch and became her ridiculously optimistic sidekick. I told her I would be with her every step of the way and that I would even get a double mastectomy with her if that’s what she had to do (yeah, when I go… I go all the way). We went to Duke together to see the doctor and were happy to learn that those measures were pretty extreme and unnecessary. She did however tell us that they wanted to get her ovaries out as soon as possible, and then the doctor looked at me and said “You need to get tested because if you have this we will want to take your ovaries out as soon as possible.”. I was still in supportive mode so I just said “yes, that sounds like a plan.” My mom did end up having surgery and she is doing really well.
During all of this I had tried to get tested. My doctor was being a pain and either wasn’t submitting my referral to Tricare or had no clue what she was doing; either way I never got a referral. My friend Kayla had also been considering getting genetic testing and we talked about it off and on for a while. She finally followed through and had her testing done so I decided to switch to her PCM and get my referral through them. Today I got the call. My referral has been approved. Tomorrow morning I will go into the lab and have my blood drawn, it will be sent off, and in a few weeks I will find out if I too am a carrier of this mutation.
When I got the call today I should have been happy. Happy that my insurance will pay for this testing, happy that I will know, but my heart dropped and the tears started flowing. I didn’t know it would hit me like this. I didn’t know I was afraid. So that’s where I am now.
Before you say it, I know. I know God is in control. I know I need to have faith, and I have as much faith as He has blessed me with. BUT I AM HUMAN. I am afraid. I don’t want to have cancer, or preventive surgery, or pass this on to my children. I don’t want this. I want this cup to pass from me, and maybe it will… but maybe it won’t. Only time and test results will tell.
So please say a prayer for me tonight. A prayer for peace and comfort and some more faith would be nice too. Thank you <3
If you’ve been through this please share your story here. I would love to hear from you.
Update: I got tested. You can read about the BRCA genetic testing experience here.