Most people don’t realize how hard it is

About a year ago, right about the time we decided I was going to need physical therapy to deal with scarring and other residual issues, my plastic surgeon said something to me that I’ll never forget: “Breast cancer patients don’t get enough credit for how tough their fight is.”

He was right. Breast cancer is considered one of the “easy” cancers these days – partly because treatments have advanced so far and partly because, from the outside, it doesn’t seem all that complicated. They just lop off your boobs, right, and then give you nice perky new ones? Some people don’t even need a mastectomy, let alone on both sides, and others can “just” get the lump removed. And now a whole bunch of us don’t need chemo or radiation? I mean, that’s a walk in the park, isn’t it? Not much worse than the flu. Besides, everyone knows someone who had it and survived now, especially if you’re old enough to qualify for AARP (which, by the way, is only 50, a fact that still blows my mind even as I use the discounts with glee).

If you have lymph node involvement or cancer that’s metastasized or that terrifying thing called “stage 4,” maybe people take it a little more seriously. And with good reason. All of those factors make a very hard journey even harder. People should take that seriously.

Even at stage 1 with a low chance of recurrence and no complications, however, breast cancer is no walk in the park. Yes, medical science has advanced incredibly. Yes, most of us do survive now. And yes, there are lots of survivors running around and most people know one. If one in eight female bodies get it (one in five worldwide, remember), knowing a survivor is almost statistically guaranteed. 

But survivors often don’t talk about how hard the battle really is with non-survivors. For one thing, people socialized as women in the Western world – and particularly the U.S. – are taught not to be a burden, not to complain, to put everyone else first and make everyone else comfortable. This isn’t an easy topic to talk about without making people uncomfortable. We’re confronting our mortality here and, given the breast cancer rates I keep mentioning, that means you’ll have to confront yours if I let you all the way behind the curtain.

For another thing, we’re trying to keep our own spirits up because if our brain isn’t on our side, we’re going to have an even rockier road. In fact, most people’s first instinct is to try to cheer us up, to tell us we’re strong and that we’ve “got this” – partly because you love us and partly because people in distress are uncomfortable to deal with and partly because it seems helpful. In most cases, though, pep talks from people who haven’t been there are more exhausting than anything else because a) we’re trying to process a lot of emotion already and b) while we know you’re trying, you really can’t understand, which means if we’re going to vent to you and have you get it, we have to contextualize and that’s a lot – mentally and emotionally. But also literally. Because breast cancer, itself, is a lot.   

Let me give you one tiny graphic example (extreme yuckiness incoming, you’ve been warned). A thing I really struggled with across my surgeries were the drains. I had two for the mastectomy and four when I switched to a DIEP flap reconstruction (more about that another time). One of the latter hung around for a month and then had to be replaced after the complication. I'm on the autism spectrum and I have sensory stuff, so having pipes stuck through my skin weirded me out anyway. But also, what comes through those tubes is super grody. The blood and the serous fluid is bad enough. The clots are enough to give you bad period flashbacks. 

And friends, there are chunks. Leftover blobs of flesh and long, stringy, sticky tissue fibers. They get stuck in the tubes and block them and then you have to squeeze down the tubes to get them unblocked so the plain old blood and fluid can keep flowing and drain out. Twice a day, you have to measure output, which means dumping out the bulbs of accumulated goo from inside your body into a little tiny container to see how much you put out. Sometimes, the chunks plop, which is gross enough by itself, but then they splash all that yucky liquid out of the little measuring cup onto the hand you’re using to hold it with because it’s a little crummy measuring cup and will fall over at the drop of a hat, thereby spilling gross goo all over your table. Anyway, if these chunks get stuck in the bulb, you have to keep squeezing and squeezing and squeezing the little bulb till they finally blow out – or pull them out like gum from a food thief dog’s booty.

See? It’s effing repulsive. And the reality is far more disgusting than that brief description. Probably you didn’t want to know about it. I didn’t either, but guess what? Not an option. I was lucky and had a partner who doesn’t get grossed out by anything except coconut, so he handled the draining and measuring when my stomach was still too iffy to manage it. Eventually, I developed a knack for looking without really looking, for kind of closing off my mind to the idea that this yucky task was in any way related to me. 

The point is, on the days my mental tricks failed and my partner wasn’t available and the drain emptying process icked me out to exhausted tears, the last thing I wanted to do was call a non-survivor and explain about the floating boobie bits in my drain cup. Someone who’s been through it? All I had to say was “I can’t take these drains today” and they’d immediately reply “oh my god, they’re the worst” and I’d know they really knew.

So yeah, in short, my surgeon was right: breast cancer survivors don’t get the credit we deserve for the fight. This thing is just…really, really hard.

But.

Is there always a “but?” Yes, there is.

In this case it’s this: but there will be moments of beauty and laughter and joy within the hard journey. Of course there will be. It’s still life. It’s just a weird, tough, often yucky part of life. 

“But Maggie,” you’re saying, “what part of those disgusting drains could possibly be beautiful or funny or joyous?”

Well, as I said, I have a terrific partner whose sense of humor works well with mine. It was hard to get overly upset or even grossed out when he was cracking jokes about “boob juice” and “milking time.” It’s so vomitous! And yet, in the moment, so funny. 

There is beauty in having shared experiences and shared moments of resilience with other survivors – even when the experiences were nasty. 

The day every single drain came out was joyous. The sense of relief was so pervasive it was almost worth having them in to begin with (but not quite).

They’re little things, I know. But they’re so very important when you’re in the thick of it. When everything is hard, the smallest bits of loveliness shine even brighter, make even more impact.

If you’re fighting now, look for those little moments and hold onto them. They’ll get you through. And when it’s over, and you’re trying to process the entire experience, those will be the memories you want to keep, the emotions you want to go back to. 

We don’t have a choice about getting breast cancer, and it is hard, but, to some extent at least, we do have a choice about what we take away from it – and what we do with those things we take away.

Throughout this blog, this podcast, you’re going to hear me say things that don’t resonate with you. If you’re a survivor yourself, you’ll hear things that you think, that’s not my experience! I don't believe that. You can’t speak for everyone. And no, I absolutely can’t. That’s kind of the point. When I say your mileage will vary, I mean from person to person and from moment to moment. But no matter what that experience looks like, it’s going to be hard in some way.

This is what I do with those takeaways. This is how I’ve found a way to make the hard thing I didn’t have a choice about doing worthwhile.