But You Don’t Look Sick … What You May Not Know About Incurable Breast Cancer

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I've been living with metastatic breast cancer for more than a year.

Metastatic breast cancer, also called stage 4 or late-stage, is said to be incurable and known to be the only kind of breast cancer that is terminal.

While I've been largely open about my experience, I find that many—even those close to me—still don't really get what's going on.

The unaware might ask: "You're not still immune-compromised, are you?"

The curious might wonder: "When will you start feeling better?"

The contemplative might probe: "What about dying are you afraid of?"

Though not everyone dealing with a disease welcomes questions, I do—heartily. I've never been a very private person, but, beyond that, I really want those around me to grasp my situation.

I want them to learn from it. To be conscious that not all people who look well are well. To understand why I'm passionate about research and medical advancements. To know my worries have the gravity of life and death. To view me as a reminder to be diligent about their health and be grateful for their lives.

I have said all of this before, but it bears repeating. And, because people still ask, here are a few more things I want to convey.

I Am More Fragile Than I Look.

Aside from the fact that I am down a boob, I pretty much still look like me. I have color in my cheeks and hair on my head. But: I am one pesky germ away from being taken down. The targeted therapy I'm on, called Ibrance, lowers my blood cell count. And without adequate neutrophils, I can't fight off bacteria or bounce back from infection as well as a healthy person. As a result, I've canceled plans and avoided certain activities and altered my lifestyle to try to protect my immune system.

I Feel OK, Most Days.

Not outstanding, but pretty good. Everything hurts just a little, but—thankfully—not a lot. I make pained noises when I get up from sitting and if I am on the floor for some reason, you can expect it to be a while before I can make myself vertical. This is a combination of abruptly going into menopause, first medically, then via hysterectomy and oophorectomy, and the Letrozole I take daily, which further lowers estrogen production. I also get an every-three-months infusion to strengthen my bones—which, contradictorily, makes me feel weaker for a time.

I Will Be on Treatment Forever.

Right now, there is no permanent treatment, or cure, for metastatic breast cancer. There are options to manage symptoms and slow progression, but it's my understanding that most of those have a limit to what they can do. They can become ineffective over time, and, if they do, the cancer will have the chance to spread from my bones, where it is fairly manageable—and supposedly not terminal—to vital organs, where it will eventually kill me. I'm on the first line of treatment right now and I'm currently stable. I hold hope that by the time that changes, there will be other options to prolong my life.

I Miss My Boobs—A Lot.

You never really realize how prominent breasts are until you find yours in the singular; not plural. I have no cleavage and will never have it again. There is décolletage everywhere to remind me of this. I am not a candidate for reconstruction probably ever, so this is something I have to live with. Yes, I have a prosthesis, but it does little more than fill out my clothes—and not particularly evenly.

It is not my nature to be envious of others, but I am of those who have two breasts, no matter how big, small or uneven they may be. I'd do just about anything to have my full set back. It's vain, yes. The fact that my doctors went through with my mastectomy is a blessing, I know. But I am still incredibly sad about losing this part of me.

I Love Life.

And I don't want to miss a minute of it. Which is my biggest fear in dying. Missing sunsets and the first daffodils of spring and silly squirrels that run around the yard and the banal and deep conversations I have with Ben and the smell of orange blossoms and Lake Michigan and my friends and family whom I enjoy very much and cheese—oh, cheese—and getting to write for a living and having earworms that last for weeks and laughing at stupid things ...

I want all of this and much more, for as long as possible.

If You're in My Life, It's by Choice.

My choice. I know that sounds arrogant, but I think it matters to say it.

I consider my time valuable and I expect the people I allow into my world to enhance and nourish it. I've had a handful of people opt out from me, but that list is very small. More, I've had an abundance of love and support. I continue to draw those who have circled around me closer—and let the rest fade away. Everyone should do this, really.

I'm Not Very Brave.

I can't tell you how many strangers have called me brave. My friends do, too, but it's the people who don't know me at all who really throw me. It's a big misperception that those fighting cancer are strong and courageous and superheroes and ass-kickers. Sure, it's nice to think that—and certainly some days we are—but, speaking for myself only, I am just doing what I have to do with this diagnosis I was handed.

I cry a lot. There was a month last year when I think I cried almost every day. Maybe it is brave to get out of bed and face every day head-on, but that just feels like living life to me. Everyone struggles—not just me, alone, with this.

Every Day Is a Battle Between Hope and Despair.

While I do manage to leave the comfort of my bed, I still wake every morning with the knowledge that I have this disease that plans to take over my body and destroy me. And I have no idea when or how that will happen.

The thoughts in my head are wildly erratic. I give myself lots of pep talks, reminding myself of the supposed effectiveness of my treatment as well as others like me who are surpassing their prognosis by years. I know how important a positive outlook is for my psyche, so I work on it all the time. And then someone—anyone—dies.

And I go back to freaking out.

Most, if not all, of us "Lifers" scrutinize every headache, every cough, every new pain—even the fleeting ones. Is this it, we wonder?


We're All Going to Die.

But I find that only a few outside of those with serious illness really believe it. I mean, I know they believe it, but they don't think it will happen any time soon. In the past year-plus, several special people in my near and greater circle were taken from this world. People who didn't deserve to go so early or to be so blindsided they didn't get the chance to contemplate all of this. In some cases, they never got to say goodbye or pursue a dream or declutter their basement.

I evangelize the importance of embracing each day, but it's these fates that I return to every time I need my own reminder.

I am luckier than I know.

Allison Kay Bannister, a West Michigan resident since 1987, professional writer since 2002 and GVSU alumna, recently launched her own freelance writing business. Allison enjoys travel, art, dance, food and exploring world cultures—and, of course, writing about all these and more.

Photo courtesy of Allison Kay Bannister.

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