Someone asked me the other day, "How did you go from being so upset about your genetic testing results to so at peace with it and openly sharing about it? What changed for you?" Several thoughts crossed my mind. I considered making a joke of it saying something like "lots of wine." But because this was a person considering going through the genetic testing process, I knew that I had to put the joking aside and be honest. The only thing that helped me was time.
When I first received my results, I was 24 1/2 years old. I then put myself into a mad rush to get to my doctor and schedule these surveillance recommendations I was given. But she told me that I couldn't yet; that we'd start at 25 years old. At the time, this angered me to no end! 6 months difference and you won't let me get a mammogram! I still don't necessarily agree with this, but I will admit that having the 6 months to wait helped me gain perspective.
In that time, I started to read up. I found a fantastic resource in the organization called Facing Our Risk of Cancer Empowered, called FORCE for short. This organization is full of women and men with a genetic predisposition to Breast and Ovarian Cancers just like me. They have a wealth of information about the latest research and findings. There are also a number of great books and movies available as well, my personal favorite being "In the Family."
Most helpful to me however, is the active, supportive online community on the FORCE message boards. Never in my time during course work with Marian would I have thought I would become active in message boards, but was I ever wrong! On these message boards, I was able to read about women at varying stages in the process. There were others just like me who were struggling to deal with their test results. There were some looking for support leading up to their risk reducing surgeries or somewhere in between still in the decision process.
For a long time, I just read these boards. I was what you'd call a lurker. I read the posts and other's responses, but never chimed in with my thoughts. Over time, I became brave enough to post and now I am a regular lending my perspective, opinions, and support whenever possible. I wonder if any of my aunts or cousins are also members? Maybe we've chatted on there and we don't even know it :) It even prompted me to join another message board full of women who all had babies around the same time that I had my first. I've met some great friends through this process!
It took a long time for me to just be able to talk about my test results. At first, just my parents knew. I think somewhere along the lines, they told my brothers because I don't remember having to tell them. Then I let a few friends in on it, but I felt like I had to hide it still at work because I didn't want Human Resources to find out what a drain I'd be on our insurance. I found though that the more I talked about it, the more confident I felt about it and the decisions that I was making.
Time also allowed me to better understand the options. At first, you are so overwhelmed by all the numbers and terms. They sound so huge and scary (and they really are!) But after having been through all of the surveillance recommendations one time, I felt much more at ease with the fact that I would be doing this for the rest of my life.
Sometimes, time is all you need. In fact, that's what I'd like most for Christmas. Just time. Time to go on a date with Mitch. Time to play dress up with my kids. Time to do my favorite things with out thinking about the laundry or my bag full of school work stacking up. Which is what I'm off to do right now.
Thanks for reading!