I got in touch with an online health forum looking for some ongoing stories about my experience with BRCA. I’ll be blogging there a few times a week for the next few months so I’ll post my blogs here too. I know I’ll have some new readers over there but I want to make sure to stay with this blog too. So here’s my first blog.
Last week I had a conversation with a woman who had just found out she had the BRCA mutation. We talked a lot about surgeons, surgery, recovery, etc. Then she asked me a question and for the first time in a long time, I was at a loss for words. “What do I tell my kids?” Hmmm. When I was diagnosed with cancer, I thought carefully about how to talk to my kids and what they needed to know. I was open and honest and focused on how my cancer would affect their world. I remember our first discussion well. I had my biopsy two weeks earlier and told them about it when I came home. They liked hearing the silly things I said when the Anesthesiologist started my Versed (the drug they give you as they are wheeling you into surgery). So I started by referencing that surgery. I was scheduled for my bilateral mastectomy 2 weeks later.
We all sat around the kitchen table, and I started the conversation.
“I have something called breast cancer. I need to have some more surgery so they can take out the bad stuff in my body. I’ll go to the hospital and stay overnight and I’ll be home the next morning. I’ll be sore when I come home so we’ll have to be careful when we hug. We’ll rent some movies and lie in bed together and watch them when I get home. Do you guys have any questions?”
First question from my daughter (she was 7 at the time). “Can we rent Hairspray?”
Here comes my 5 year old son. “No, we have to agree on the movie.”
After a few minutes of some sibling arguing, I told them we could rent more than one movie. Fortunately at the time, my 1 year old didn’t have an opinion about that.
Next question again from my daughter. “Will someone remember what you say after they give you the silly medicine?”
I was pleased with the way the conversation went. They were old enough to understand but young enough to still be focused on how this would affect them. Perfect.
Bilateral Mastectomy went well and I was on to Chemotherapy. Another conversation.
“Guys, I’m going to have some yucky medicine. It will make me pretty tired for a little while afterwards so I’m going to schedule some play dates for you. You’ll go to your friend’s houses and get to eat dinner over and play for awhile and then come home. Any questions?”
Another one from my daughter, “Can I go to Cara and Rachel’s houses?”
“Sure. One thing that can happen with this medicine is that my hair might fall out for a little while. I’m going to get a wig.” I reminded my daughter about when she donated her hair a year earlier and her hair was used to make a wig for someone. I even joked that maybe we could get her hair back for my wig. They were pretty quick to tell their friends that their mom might be bald soon.
Once my hair fell out, they were fine. I wore a wig or a half wig (wig with a hat) in public but when I was home, I was bald. Couldn’t wait to take the thing off my head. My kids did not mind me walking around the house with no hair even if their friends were over. There were so many really cute comments and funny things that happened throughout my treatment and my 5 months as a baldy. Stay tuned for another post when I’ll share some super cute and funny comments from my kids and my friend’s kids.
I’m still not completely sure how you address the BRCA issue. I know my kids are too young to understand a genetic mutation, and I would not want them to worry about their own health. But I’m not entirely sure how someone could explain surgeries to their children without cancer. I’ve asked for some feedback from the online health forum and my friends at FORCE so if you’re interested, please check it out. I’d also love it if you’d join the network and become my friend.