Children’s Names and ages: Abigail (12), Emma (9), Carter (6)
Diagnosis: Breast Cancer
Treatments: Modified radical double mastectomy (May 2011); Chemotherapy:
Adriamycin and Cytoxan for 4 rounds, Taxol for 4 rounds (June-August 2011); 33
radiation treatments (Oct-Nov 2011). Currently getting herceptin via my port
every 3 weeks and taking Fareston daily
Current Status: NED
Twitter handle: @Brandie185
Blog: Journey of 1000 Stitches http://journeyof1000stitches.blogspot.com/
But then the biopsy came back and suddenly everything was all so real. And it hit me, I’d have to tell my kids I had cancer. I told them almost right away. Again, because they are home with me all day, it’s pretty obvious when something isn’t right. And it didn’t seem fair to not tell them that day. I told my mother first, my husband second (here’s where I insert I tried to tell him first but he was at work, in a meeting, and I couldn’t get a hold of him!), and my kids, third.
“I told them the doctor called and told me I had cancer. I told them I was very sad about it and scared, and it was okay if they were too.”
I called them to my room and told them the doctor called and told me I had cancer. I told them I was very sad about it and scared, and it was okay if they were too. We hugged. We cried. My nine-year-old asked me if I was going to die. I was honest: I told her that the doctors and I were going to do anything we could to prevent that, but that no one knows the future. My oldest daughter asked me if that meant she would get breast cancer, too. Again, I just told her, we’d do what we can to prevent it, but we can’t predict the future. My son? He asked if he could go play the Wii now! Which made us all laugh! Then I told them they could eat chocolate, because I thought chocolate made everything better. Given it was not even lunch time yet, I’m pretty sure they thought the cancer might have been affecting my brain because I’ve never let them eat chocolate before lunch! But we got some candy, and somehow things really did seem to be better.
“Then I told them they could eat chocolate, because I thought chocolate made everything better.”
As another aside, my middle child later told me she really liked how we ate chocolate and that if she ever got cancer, she’d let her kids eat chocolate when she told them!
PWC: What piece of advice would you give a parent who was just diagnosed?
Brandie: First, let others treat you the way you would want to treat them if they were going through this. Think about it, if something happened to your neighbor, you’d want to bring them meals. You’d want to help clean their house. You’d want to drive the kids to baseball practice. You’d want to help out and do things for them. It is, for most of us, one million times harder to allow others to do those things for us. But let them. You do not need to be super(wo)man during this time. People want to help. You will probably need the help. So accept it.
Second, it’s okay to not be happy or brave all the time. Sometimes, as parents, we don’t want our kids to see us cry or upset or unhappy. But it’s really okay for them to see more than just the “good” emotions. They are probably dealing with the same huge mix of emotions, and will be more willing to share them with you if they see that you are feeling the same way.
PWC: What’s the best thing someone did for you or your family to help during cancer?
Brandie: This is hard to pick. We received so much love and support in so many ways. If you twisted my arm and I had to pick, I’d say bringing meals. Someone create a takethemameal.com account and sent it out to everyone. We had meals three times a week for a few months. This was a huge help. We didn’t have to plan meals, cook meals, or shop for things to make meals with. This was such an incredible help.
“Sometimes, as parents, we don’t want our kids to see us cry or upset or unhappy. But it’s really okay for them to see more than just the “good” emotions.”
A few times, people came over and cleaned for us, which was a great help. My aunt came over and did deep cleaning for me – scrubbing baseboards and cabinets and that was lovely.
And all the cards, messages, e-mails, notes were a huge help. Dinner and cleaning provided a huge physical help. But the cards and prayers, were a huge emotional support for me. And it seemed like one would arrive just when I needed it the most.
PWC: What’s the best thing someone said to you when you had cancer?
Brandie: There was no one clear thing that stands out to me. BUT. And this is a huge but, the things that I loved hearing were when people agreed that this whole thing just sucked. And when people gave me room to just be in that moment. I mean, let’s be honest, when I’m crying about some chemo side effect truly, the last thing I want is someone saying in an chipper voice saying “Just stay positive! You’ll get better!” That is not to say I don’t appreciate the sentiment. And I do understand these things come from a place of love. But in those moments, I needed to hear from someone else that yes, in fact, things do suck. And it is hard. And I was blessed to have people around me who did that so well.
PWC: What has helped your kids though this tough time?
I asked my girls and they said, they appreciated that we told them about the cancer and told them details about it. They could really understand what was happening and didn’t need to guess about what was going on (they both said they would have guessed things were a lot worse than they were).
“The things that I loved hearing were when people agreed that this whole thing just sucked.”
They, especially the 12-year-old, also appreciated people who didn’t make a big deal out of it all the time. With all the chaos in the house, I think they appreciated things that felt normal. They also loved that we had so many people who helped get them to activities when I was unable to do it for them.
PWC: Wig, headscarf or bare-naked head?
Brandie: Head scarf and hats all the way. I think I wore my wig twice, for about 10 minutes each time. In the summer, it was just too hot to have a wig on. Head scarves were much kinder. And in the winter (or on cooler days) I loved a good knit hat. Friends picked up pretty quickly I liked scarves and hats and I was given a lot of them too! So it was fun to decide which to wear each day.
PWC: What keeps you awake at night?
Brandie: Fears of recurrence. Fears that my daughters will have to go through the same thing. Frustration at not being back to “normal” yet. Frustration at how slow the healing feels like when I’m in it. Worrying about BPA, soy, plastics, and non-organic meats, dairy products, etc. Are they safe? Aren’t they. Is that bump I’m feeling the cancer coming back (and yes, I’ve been to a doctor about two that I’ve found that are thankfully nothing!). Wondering if I will ever get to reconstruction. Thinking about how I hate having only one breast now. Wondering if my kids will be totally screwed up because so much of the last year has been about me. Have I thanked everyone enough? Will the softball game get rained out? How much in medical bills will we spend this week? Is that headache I’ve had all day really a headache? Or did the cancer spread? Who will go home on next episode of Project Runway? Am I sharing too much about all of this on-line? Am I not sharing enough? What was that lady on the Real Housewives thinking? When was the last time we dusted? Will this chemo-brain/brain fog ever go away? Is there cancer growing right now in my body? How would I know? Will I see my kids as adults? Will I get to hold my grandbabies? Does everyone have clean clothes to wear tomorrow? How do I turn my brain off? Why can’t I fall asleep?
And that, my friends is just a small sampling of what I think about at night as I’m trying to sleep. LOL!
PWC: How do you feel when someone calls you an inspiration?
Brandie: Again, I appreciate the sentiment. And I love the place this is coming from. And yet. I do not feel like an inspiration. I didn’t do anything special. I was unlucky enough to get diagnosed with cancer. And then the doctors did what they do for every cancer patient. I didn’t ask for this. I didn’t willingly accept it. I got through it, mostly kicking and screaming. So I don’t feel that inspirational.
PWC: What else would you like parents with cancer to know about you and your experience?
Brandie: I felt like the world’s worst mother when all of this happened. Okay, some days I still do. We watched a lot of TV over the last year. I haven’t cooked much (and ease of making meals was the number one thing I worried about). My kids couldn’t always have friends over. I felt like I was a failure as a mother.
“I do not feel like an inspiration. I didn’t do anything special. I was unlucky enough to get diagnosed with cancer.”
I also carry an incredible amount of guilt. I’ve turned all of our lives upside down. Now, of course, my husband says I didn’t do all of this, cancer did. But there is guilt inside of me still.
But I’m working on letting it go. The truth is, things happen. Yes, I got cancer. But we did the best we could to get through. It didn’t always look picture-perfect. But, really? Our life wasn’t picture-perfect before. We had bad days before cancer too. We had a whole lot of them during cancer.
“I felt like the world’s worst mother when all of this happened. Okay, some days I still do.”
If I can step back for a few moments, and see the big picture? Watching too much TV for a few months isn’t going to kill them. In fact, they don’t complain about it at all. It’s hard to remember that in the moment. In fact, it’s hard for me to remember that outside of the moment. I’m working on it. But I think we all need to remember to be gentle with ourselves. Even when it seems really hard. We need to treat ourselves like we would our best friend.