Friday, January 22, 2016

What do we tell the kids?

Last week, the Fred Hutchinson Cancer Center hosted a Twitter chat, "Coming Out with Cancer." I was busy at work, so was only able to jump in a couple of times, but I felt the topic was so important and so interesting, that I could share my experience here.

When my mom had breast cancer in the early 1980s, she didn't talk about it. Nobody did. I understand that she didn't tell me, as I was a young child, and she didn't want to scare or worry me. I know she also didn't tell a lot of her friends. When she was in her final decline, a former colleague reached out to her, and she said, "She doesn't even know I'm sick," and I don't think she returned the call. I understand that times were different, and there was still a stigma about cancer overall, and especially breast cancer.

I remember a couple years after my mom died, one awful teacher asked me what had happened. I said she had breast cancer, and the bitch (excuse my language) made a cutting motion with her finger over her breast and whispered, "did they cut it off?" So, that was some of the climate.

But I would lie if I said I agree with how she handled it, at least when it came to me. I was a pretty intuitive kid and had figured out that she had had breast cancer, but figured it was safely in the past. My dad and mom leveled with me when it was clear she would soon die.

So now, here I sit with my own breast cancer diagnosis and with my own young children. And I knew that, even if I wanted to hide it, my kids--especially my 9 year old--would figure it out and would not want to be left out. I also know that the unknown is much scarier than the known. And I wanted them by my side and on my side.

So, as soon as I had an action plan for surgery, I sat down with Kayleigh while Hope (age 4) was a few feet away at the kitchen counter. I told her that I was going to have a pretty big surgery, that we had discovered I had a a small cancer, and well... Mommy's getting new boobies. From across the room, Hope said, "What did you say?!" "Mommy's getting new boobies." <Laughter> "No! Hahahaha!"

G-d bless Hope. She completely broke the tension in the room, and with that, we all started laughing.

Of course, Kayleigh understood the weight of the topic and quickly turned serious again with many questions and some tears. Up until now, the only people she's ever known to have breast cancer, have died, and I wanted her to understand that wasn't a forgone conclusion. So, I explained--in terms she could understand--everything I knew. I told her that I would do everything I could to get rid of the cancer through surgery and medicines, and then we would hope for the best, and I have every reason to believe that I'll be fine. She asked, if cancer is abnormal cells, and cells are microscopic, what happens if an unseen cell escapes?

Oh my, is my daughter not the most brilliant 9-year old ever? I explained that's why I would have medicines, to try to kill any escapees.

The first several weeks were very hard; Kayleigh was very anxious and afraid I would die. The best thing I could do to reassure her was to promise that she knew everything there was to know, and that I would never keep any secrets from her. So, when I tell her my cancer is early stage and as far as we know, it's been removed, it's the truth. I also don't use the word "cure"  and I've brought her with me to oncology appointments, so she's completely in the know.

For Hope, things are more abstract. I bought a book When Mommy Had a Mastectomy, which was an excellent tool for explaining to her what to expect. I liked that it really focused on the surgery, since at the time, we didn't know whether I would have chemo or radiation. The only problem was that, after the surgery, when I reminded Hope how she needed to be independent and helpful, she said, "but Mommy, you're not as sick as the mommy in the book." Who knew that a relatively good recovery would work against me?

The thing that has been the most therapeutic for the kids has been my return to "normalcy." Most especially, me going to work each day and exercising.

As for the rest of the world, cancer doesn't define me, but it is part of my reality. So, I'll talk about it or I won't, depending on the context. That's what works for me. Your mileage may vary.