Living With Dying

Thursday, February 19, 2015 by Meg   •   Filed under Mom Stories/Opinion

A cancer diagnosis changes everything. 

"Emotional roller coaster" is a phrase that does little justice to the upheaval one feels after diagnosis with a major illness, terminal or not. And the fear. So much fear. While many have thoughts about whether there will be pain or how long they have, worry about the loved ones left behind is a huge source of worry, particularly for parents. So I have invited a friend to share her experience with metastatic breast cancer. Cancer is messy, but there are ways to cope. For more insight on dealing with a cancer diagnosis, check out Cancer Made Me a Shallower Person, A Breast Cancer Alphabet and My Cancer Mommy.

By: Beth Caldwell

I have metastatic breast cancer. That's the kind that has spread to other parts of your body besides your breast area--in my case, to my femur and my sternum. 

It's also the kind of breast cancer that kills. Metastatic breast cancer is 99% fatal. The other 1% die of something else before the cancer can kill them, like a plane crash, or being hit by the proverbial bus. The average life expectancy after diagnosis with metastatic breast cancer is about 2-3 years. Some folks live with it a lot longer, but eventually, we all die. 

The other day, I was talking to my husband about this whole cancer bullshit, and I said to him, "I wish I was a hermit. If I didn't have any people I cared about, I could do this cancer thing standing on my head." But I'm not a hermit. I'm an extroverted, married mom of two small kids. It's by far the worst part of having a terminal illness, the worrying about what you'll leave in your wake when you're gone. I feel like a time bomb, and one day I'll go off, and rip to shreds the people standing too close to me.

And the thing that scares me the most is what happens to my husband and the kids, who are standing closest of all. Especially the kids, because they're kids. Losing me will be traumatic. It's awful when your parent dies whatever your age, but I imagine it's particularly hard on children. I'm lucky to have a husband who's a fantastic dad, and family and friends who will help support them. But it's still hard. When my daughter wakes up crying at night and says "I need my mama,” it guts me. Because one day she'll wake up and I won't be there.

How do I live with it? I mean, how does anyone live with some crazy shit like this? 

You just do. You cry when you think about it. You try to focus on the here and now, so you don't hysterically cry about it in front of your kids and scare the shit out of them. You take psych meds that help with the anxiety. You talk to a therapist. You join a support group. You write out your feelings.

I heard a psychiatrist speaking about how to talk to your kids about your metastatic breast cancer diagnosis, and he said that it's important to tell the truth, and nothing but the truth, but you don't have to tell the whole truth. That rang true to me. I've told the kids I have cancer. They watched as my husband shaved my head when the hair started to fall out during chemo. They've met my oncologist and seen where my treatments have happened. But they don't know my diagnosis is terminal because I could live 2 years, or I could live 20, and there's no way to know which. So, until it becomes clear that death is coming sooner instead of later, we just don't talk about death.     

I personally don't try to make every moment perfect for the kids, because it's impossible, and besides, that's not healthy for them. Living a normal life, where they learn to live with boredom and disappointment and frustration, is better for them. It'll give them skills they can use when shit really hits the fan. Which it will someday. I wouldn't be doing them any favors by coddling them through life when what they need is to be strong.

I also talk to people who won't fall apart on me, because some people just aren't tough enough to hear me talking about my death (and that's OK, this shit is hard). I tell those tough enough what I think my family will need when I'm gone. And they tell me how they plan to help. I'm lucky to have them. If I didn't, I think this would be a lot harder. Having a support network is so important as a parent, but even more important for a parent with a terminal illness.

I also know this: having a terminal cancer diagnosis completely sucks. The trauma it inflicts changes you, and changes those around you. It's hard to live with. But you CAN live with it. It takes help and hard work, but lots of people find a way to live perfectly delightful lives while they can. My kids will be hurt when that time bomb explodes, it's true. But if I've taught them to be resilient, and arranged for medics to treat their wounds, they'll come out the other side of this.

I'm not gonna lie, it’s really fucking hard. Impossible, really, not to worry about what my stupid, fucked-up body is going to do to my children someday. So I give myself space to worry and fall apart sometimes, and then I pick myself up again, and remind myself that I am preparing them for what's to come, and I just go on. I've had a lot of people tell me they're impressed with how strong I am. Honestly, I don't think I'm any stronger than the average bear. What choice do I have but to keep moving forward as best I can? 

You'd be surprised what you can stand when you’re forced to.

Beth Caldwell is a former civil rights lawyer, a mom of two, and a blogger whose writing has appeared on Huffington Post. She is a contributor to the upcoming anthology, I STILL Just Want To Pee Alone, due out in Spring 2015. You can visit her on Facebook or Twitter and catch up on her recent blogs at The Cult of Perfect Motherhood

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