I’ve had a freckle on my right foot my entire life. It really hadn’t changed too much but it was bigger and a little bit darker than the million other freckles on my body and I decided it didn’t need to be there anymore. I’m on the “if I don’t need it, and it could turn into something bad someday, get rid of it” plan. So that’s what I did yesterday. Both the doctor and nurse told me it would hurt. But I told them how tough I am now that I’ve been through cancer treatment—nothing phases me anymore. I used to be a fainter but I don’t anymore, and I’m so proud of myself for overcoming this. And as I was going on about my thick skin and she was stitching me up, I started to feel light headed and then I fainted. OOPS. Guess I’m not quite over that part of my life.
Later in the day, I picked up 6 kids from school and told them about my fainting. I thought the whole thing was pretty funny and so did they. Somehow the conversation turned to the exam that men get when they turn 40. Something about a greeting card that her parents bought for her uncle’s 40th birthday. I don’t remember it exactly but it was about a doctor losing a watch in a man’s butt. The kids thought this was absolutely hilarious but the poor 6 year old boys in the car were terrified.
Later that evening we were talking again about the 40 year old exam with Jon at dinner. I calmed my son and told him not to worry too much. Women have to go through much worse. My daughter said “Yeah, like breast cancer.” She made this comment so matter-of-factly like it was just part of life. Pretty amazing. I told her that’s why I work so hard to raise money so she doesn’t ever have breast cancer. She thought that was cool but didn’t seem overly concerned either way.
During my cancer treatment, my kids helped to keep me happy and focused on feeling good. They also said so many cute things that made me smile. It’s fun for me to look back at my caringbridge site and remember some of the cutest comments and moments. For those of you that read my caringbridge site, these stories won’t be new for you.
My hair started falling out right before Halloween so I had the remaining hair shaved. For those of you that haven’t experienced hair loss from chemo, it’s pretty uncomfortable when it’s coming out so I was very happy once it was completely gone. I wasn’t sure how the kids would feel about the bald head but I found out quickly when I heard from another parent that my Kindergartener told her that his mom shaved her head and she looked beautiful. That thought continued to echo in my head the entire time I was completely bald. His sweet little friend couldn’t stop telling me how beautiful I looked and even said to his mom “Ellyn had earrings on and everything.” Love those little boys.
Throughout my bald days, we had many playdates that ended with a couple of kids using my bald head as an art canvas. I grabbed the washable markers, sat on a chair or the floor and let them decorate my head. The kids had fun, and it made my bald head a lot less scary.
Although the little guy was still pretty young, he loved my hats and bandanas. In the beginning he tried to see if his hair would come on and off too.
Little guy sporting my pink bandana. I know he looks like a girl–this was before his first haircut.
My daughter didn’t really care too much either way about my bald head. But she had her own funny moments. Early on, she named my port “lumpy” She made sure to hug me on the others side of my body to avoid an encounter with Lumpy. One day after a chemo treatment, I apologize for being a little tired and a little cranky. And her reply was pretty funny. “I know Lumpy got medicine today” and she looked up in my eyes and asked “Was Lumpy scared?”
And one of my favorite stories was from the day before my last treatment. I pulled this one right from my caringbridge site.
“On Tuesday, Michelle convened my 7 year old and three of her friends to help make the brownie cake and cards. At the same time, my 5 year old and Michelle’s 5 year old were busy shopping with Michelle’s mom for an end of chemo gift. I got the cutest, sweetest cards from the 4 girls all decorated beautifully with “No More Medicine” displayed on the cards. One wished me a happy life and said she hoped I never had to do this again. As the girls were sitting around making the cake, they had an interesting discussion. One said, “I know we are doing this because Ellyn has cancer”, to which another responded with eyes wide, “Ellyn has cancer??” That’s when my daughter piped in, “Not cancer, BREAST cancer.” “Ohhhhhh” they all responded.”
Posting my blogs on Trusera.com has given me an opportunity to think back on some of my experiences last year and they weren’t all negative. Yes, I’m glad they are in the past but I continued to live my life throughout the year enjoying many days and laughing with my kids whenever I could.
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.