Skip to main content

BRCA

By
In May of 2024 I decided to finally do something I’ve been putting off forever. I got some genetic testing done to see if I carry the BRCA1 gene mutation that my half sister, Bethany, does. Bethany had a double mastectomy after finding an unusual lump but we’ve also had an aunt pass away from breast cancer and her daughter had a double mastectomy as a preventative measure. 

I learned that I do have the mutation. And then I crashed out and decided I wasn’t ready to deal with that. So I put it off again. A few months later I reached out and asked to be scheduled. No one called me back.

This week it came to mind again and I decided I should stop putting it off. So I reached out to the woman who did my testing and asked her again to put in a referral for screening.

Then I missed their call. 

I called back.

"Who do you wan tto schedule with?"
"I have no idea. I did some testing, I got results, I don't know what the next steps are."
"I'm looking at your record and that was over a year ago."
"Yes, I know."
"So maybe we should schedule you with the same provider?"
"I don't think so. She just did the testing. The testing is done. Now I need someone else."
"But it's been a year."
"Yes, I am aware."

Around in circles we went. She said she would do some digging and find out. I got a call back and was so excited to schedule an appointment for the next week! I spent all weekend freaking out about it and then on Monday I got a call back. 

"I'm sorry, I was filling in for someone else and didn't realize for high risk they want you to see a certain provider. Her next availability is in a month."

 I joined a Facebook group for women with this same gene. 

And now I want to crash out and not deal with it again. 

I’m not sure why that’s my reaction. Maybe I do know. It’s my reaction because nothing is wrong right now. I’m healthy. I’m fine. I’m not currently in danger. So why rock the boat?

My options will be to have the preventative surgery, or just closely monitor my body and get scans every 6 months--knowing that the risk is if the scans aren't frequent enough and I do get the cancer, it's an aggressive cancer and at that point I'll need surgery and chemotherapy.

I loathe the idea of going to the doctor and being poked and prodded every six months. I also hate the idea of having a surgery that could completely mess with my body and hormones and change my life forever. But in the Facebook group there are several women who were doing the scanning and are now dealing with the cancer and saying they wish they had just done the surgery. 

I know I’m jumping ahead. I haven’t even had my screening yet or talked to a doctor. But I feel like I have this huge decision to make and no one to talk about it with. I feel trapped with an impossible decision to make. I half hope the screening shows I already have cancer just so the decision will be made for me! 

The worst part is knowing my girls will have to make a similar decision some day because they could have this gene from me. Or they could lose me because this could kill me. 

Comments

Post a Comment

Popular posts from this blog

Work stuff

By
 My job is difficult to describe to people outside of non-profits so I usually don't. I say I'm a Grant Writer--because I am, but to some people that means a lot and to others it means nothing. I don't get too many people who are interested. To be truthful, I do think grant writing is a spectacular professional that takes a lot of skill. Not only do you have to be an excellent writer, able to tell the stories of the organization in a way that is interesting and inspiring, but you also have to be savvy enough to find your way around hundreds of different online portals (none of which are user friendly) and be diligent enough to meet strict deadlines and compile loads and loads of paperwork. At my organization we submit about 15-30 applications every month and every single application has different requirements and expectations in order to receive funding. The work doesn't stop when an application is turned in. Once we get that funding it adds another to-do to our list, m...
Post a Comment
Read more

I did it!

By
Today, I achieved a great professional achievement. I got my CFRE. It’s a big deal.  Brendon is out of town so I took the girls to get sushi to celebrate. This was our conversation on the way home.  *Passed by a Husband and Wife Law Team billboard Eisley: That dude wears suspenders. I would not call them first. I would call Jonathan first.  Me: I would call Brother Briggs first because he’s a criminal defense lawyer. Jon does HOA law which would not be very useful. Eisley: Ooo yeah. I feel like I’m going to be that kid some day. I’d call Brittany because she has experience, then Bro Briggs.  Me: You’re going to be the one to call to hide a body?  Eisley: Yeah. I’ll probably already be hiding one. I feel like I’m the Brittany, Aspen is Brodie, Kaybree is Dad.  Kaybree: Hmmm, I’m not sure. Aspen—do you like girls? Aspen: What? Kaybree: Just, would you like to marry a girl one day? Aspen: No.  Eisley: If you did, we would love her.  And then we all l...
Post a Comment
Read more

Tearful moments

By
In January I cried through my appointments with my oncology doctor and surgeons. The whole idea of having a preventative mastectomy was overwhelming.  I made my peace with it. I made a plan for myself. Work slows down near the end of the year and we get all sorts of holidays so I thought if I could take my time off then, I would be fine. I made it through two whole doctor's appointments with no tears and no fear, because I had a plan, and then today that was messed up. My doctor told me reconstruction could take up to three months--which means I can't do the surgery when I originally planned if I want to get it all done in one calendar year (for insurance purposes). She suggested moving it up to August. That is next month. And if we do the surgery in August that means our family trip we have planned for October--it's a no. Camping trip I planned for September? Probably not. And honestly that all makes me more upset than anything. And suddenly I'm crying again.  I want t...
Post a Comment
Read more