Metastatic breast cancer survivor: Living with ‘realistic optimism’

As a metastatic breast cancer survivor, I participate in a lot of support groups. I’m probably active in at least five or six on Facebook alone. The people I’m closest to are in the “Stage IV Under 40” and the “Pregnant or Breastfeeding with Cancer” communities.

One of the hardest parts of having metastatic -- or stage IV -- cancer is losing friends in those support groups. And since I was diagnosed in October 2016, I’ve had more close friends from there die than I did in my entire 32 years before that. In fact, the very first person I connected with — who was diagnosed at the same time I was — passed away in April. That was really, really difficult.

But I try not to get discouraged or let it affect my perception of the disease. Because the way I see it, everybody’s cancer experience is different. My story is not my friends’ who have passed. They had their own stories. My story is my story. And it is unique to me.

‘Realistic optimism’ defined: enjoying the time we have

The hardest part of having cancer has been knowing I have two genetic mutations — BRCA2 and CHEK2 — that I might’ve passed down to my kids. My understanding is it’s rare to have one, but almost unheard of to have two. And my kids have a 50% chance of inheriting each one from me.

We haven’t had the kids tested yet. Our pediatrician said there’s no reason to until they’re older. So that’s for further down the road. I just hate that that might be something they’re going to have to worry about.

In the meanwhile, I’m determined to enjoy the time we have together. I call it realistic optimism. Because even though I show no evidence of disease now, metastatic cancer is considered incurable. So, it’s going to show back up eventually.

Still, my disease is kind of sleeping right now, so I’m focused on being positive for myself and my kids. And who knows? Maybe I’ll be in the 1% of patients who get to live a normal life, even after a stage IV diagnosis.

Dealing with side effects: nausea and fatigue

Compared to those two things, dealing with side effects is pretty small potatoes. But nausea and fatigue continue to be a challenge. I’m on a drug called Tamoxifen right now and it makes me nauseous, so I only take it at bedtime. There are a lot of medications that treat nausea, but they all come with side effects, like constipation or extreme fatigue. One made me want to sleep all day. So I wasn’t nauseous, but I also wasn’t conscious.

Even now, I am still so tired from the radiation treatments. I’m waiting for my stamina to come back. And there are times when I’m so tired I don’t even want to play with my kids, which is hard.

Hair loss: a surprisingly big deal

The most surprising aspect of having cancer was what a huge deal losing my hair turned out to be. I’m one of those people who said, “Oh, it’s just hair. It’ll grow back.” But when it started coming out in handfuls during the second round of chemotherapy, I was devastated.

My mom came over and helped my 4-year-old daughter cut off hunks of my hair. Then, she shaved my head. My daughter thought it was the coolest thing.

Normally, I’m a pretty open book, but when I lost all my hair, I kind of wanted to hide. I didn’t want to see people’s sympathy looks, so I wore beanies and hats and scarves. Then one day I forgot my hat when I went to my daughter’s school, and all the kids were so inquisitive. I explained that I was sick and one of the medicines that would make me better also caused my hair to fall out.

Now that my hair is growing back, the children are almost more excited about it than I am. It’s in a pixie cut today, because it’s really just 15 cowlicks all over my head. But I don’t even care. Because I have hair again! And I’m so glad to have it back.

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