For 16 months, I’ve been living with metastatic breast cancer (MBC)—breast cancer that has spread to other places in my body. In that time, so many people have said, “I can’t imagine what it’s like,” or they’ve made other comments that indicate they don’t really understand the ramifications of this disease. So, I thought I’d write a behind-the-scenes peek at what this journey has been like.

I realize that I’m a sample of one. A hundred women could write an account, and each would be unique. I also realize that I am very early in the disease process (thankfully)—my story a year or three or ten years from now will be very different. Still, many of these themes seem universal. If you tune in to the end (apologies, cuz this is long), maybe you’ll learn something that helps you relate better to me now and in the future—or at least understand my behavior and moods sometimes. And maybe I’ll give some meaningful words to this disease that help you support the next person you run into with MBC or similar disease.

General Context of MBC

First, some general context about this disease. As many as 30% of women who have early-stage breast cancer end up with MBC. Scientists don’t yet know why. Breast cancer typically metastasizes to the liver, lungs, bones, and brain. There are many treatment options to keep the disease stable or even reduce it for some period of time, and other treatments that can help relieve symptoms of disease. In fact, women with MBC may go through a dozen or more types of treatments as the disease progresses and symptoms increase. And there have been many advances in treatments to give women with MBC a better shot at surviving and thriving. But MBC is not curable with current medical treatments and technologies. The goal is to slow disease progression and give women more time. Statistics say the 5-year survival rate is only about 22-35%.

Facts of My Situation

What’s my experience thus far? The “mets” (short for metastases) are in my liver and T2 vertebrae, between the shoulder blades. I am on the first line of treatments for the type of MBC I have (estrogen receptor+, progesterone receptor+, HER2-). Those treatments consist of one pill daily, another pill twice daily, monthly injections, and quarterly IV infusions. None are considered chemo at this point. I’ve had to change one medication because it started causing a rash. So far, treatments have been effective at knocking back the liver mets, and the cancer in the vertebrae was initially reduced but has had some increased activity that we’re watching—the doctor hadn’t yet called it progression. I’m scheduled for a scan in early January, so we’ll see then if things are holding steady, as most signs appear, or if there’s trouble brewing.

Effects of My Situation

The Physical. Symptoms of disease have been largely nonexistent to this point. My blood work has consistently indicated no reduction in liver function, nor any other organ function, nor any serious erosion of the vertebrae from the mets. Side effects of the treatments have been mostly mild, with the most frequent issue being fatigue. I just don’t have the energy I used to. Beyond my immediate family, folks probably don’t notice much difference, if any. I do everything I want to; but being tired makes it all too easy to skip the things I’m not really motivated to do.

The Emotional. The most serious effects yet of MBC have been emotional and mental in nature. It’s emotionally exhausting to walk this road. Every day, I’m reminded of this disease as I take medication. Every 28 days, I return to the doctor to find out how I’m doing. The most telling sign he checks is the cancer tumor marker (CA 27.29). Mine dropped several times early on in treatment and then leveled out, slightly above normal. The past 6 months, it’s crept up little by little. The doctor still considers the levels to indicate “stable” disease—but my brain panics with each increase and wonders what the next month will bring. Regardless of how good things might look at a doctor visit, I only have 28 days of status quo. Each appointment brings the potential for signs of progression or other issues. Every time I walk through the oncologist’s door, I’m filled with worry—and sometimes outright dread—over what he will say.

Often, I feel incredibly alone because most people don’t quite understand what MBC is. When you say, “I have cancer,” most people think of the treatment trajectory as tests and scans, diagnosis, maybe surgery, chemo and/or radiation, recovery, scans for another little while, then cancer-free. Thus, I’m frequently asked, “When are your treatments done?” or “How many treatments do you have left?” The reality is, with MBC, you’re never done. Well, you are, but not in a cancer-free, move-on-with-life sort of way. The treatment trajectory is typically years long and consists of many changes in medications as the cancer learns how to defeat the current regimen. MBC is a long haul. If you’re lucky, a long, long haul. But there’s no party at the end of treatment.

Looks Can Be Deceiving: Behind the Positive Disposition

Since diagnosis, I’ve had countless people comment on how good I look or how positive I am. I’m often told you’d never know I was living with cancer. On the face of it, there’s not much to point to my being a person with cancer. I haven’t lost my hair. My face isn’t ashen with dark bags under my eyes. I haven’t lost a ton of weight or puffed up from treatments or disease. I’m not unable to eat or walk or take care of myself. And most days, I don’t feel “sick.” In fact, most days I’m able to carry on with life just fine and not dwell too much on this disease.

But, there’s a lot going on in my brain related to this disease, and I can’t escape from it for very long. Just about every day, something I hear, see, or experience brings the disease to mind. Sometimes the thought is fleeting. More often than not, the “something”—even if it’s entirely benign or meant to be helpful— sends my brain spiraling. It filters the phrase, image, or experience through the cancer lens and takes me to a dark place. Here are some examples.

[Disclaimer: If you see yourself in any of the examples, particularly related to what people say, know that I am not pointing fingers; this isn’t directed at anyone. The fact that I’m sharing the example means it’s a common occurrence. And I know that every word and deed comes from a place of love, concern, and genuine interest, regardless of how my brain processes it.]

Fleeting good looks. Take the comment “You look good.” In my brain, I’m thinking, yeah, for now. But what are you going to say when I start treatments that make my hair fall out or my face is drawn or pale? Someday I may look terrible. I dread feeling sick and equally dread looking sick—so everyone KNOWS I have cancer. Then I won’t be able to hide it or pretend. I wonder how long that’ll be. And how bad I’ll look. Then I wonder, do I even look OK now, or are most people too kind to tell me I look tired or worn out?

Anger about “any one of us.” If I mention feeling uncertain about the future or wanting to do the things that really matter, I frequently hear, “Well, any one of us could be hit by a bus tomorrow” or “We should all live like our days are numbered.” While that’s true, most people don’t have to consciously face their mortality on a regular basis. And most people haven’t been told they’ll become seriously ill before they grow old. They don’t have to wonder when making plans six months from now whether they’ll be able to do what’s planned. They don’t secretly cringe when someone talks about retirement because there’s a real possibility they won’t make it to retirement. So, yes—none of us knows our expiration date, but at the same time, few people have to consider it imminently. And death aside, there’s the realization that how I feel right now is likely the best I will ever feel. That’s sobering. So, I’d love for folks to keep the hypothetical bus to themselves. (Yes, sometimes I get flat-out angry at what people say even though I know it’s meant with the best intention—and I really wish people would stick with “Gee, that really stinks” or “I can only imagine that’s hard.”)

Day dreams of my death. Watching a movie that shows a funeral, attending another person’s funeral, and even passing a cemetery or hearse can lead me to start visualizing my own demise in a very practical way. Which funeral home should we choose—the one up the street or farther away so folks don’t have to drive by it all the time? Do I want to be cremated or buried? If I’m buried, who would we pick as pall bearers? What songs do I want at my funeral? I wonder if this person or that will make the trip here for it. I hope there will be laughter amid tears at my funeral—sort of an end-of-treatment party.

Sniffles of doom. If I develop a cough, a new pain somewhere, or a headache, my mind races to what it could be. Have mets developed in my lungs? Is the tumor in my spine getting worse? What if the headache means brain mets? And my imagination starts to run way ahead. If the cancer’s getting worse, what treatment comes next? Will I feel well enough to work? What if I can’t participate in [fill in the one of many life events coming up]? Will I eventually have to stop driving? I can mentally go from simple sniffle to bedridden in the span of 20 seconds.

Back off, helpers (but not really). When folks offer to do something for me, my usual response is “No, I’ve got it.” Sometimes that “no” is quite forceful. I’m not trying to reject you or just being stubborn. Well, OK, I am being stubborn. But for good reason. Eventually, I won’t be able to do some things, and I’ll need help. So right now, while I’m able to do just about everything, I want to do it, even if I’m tired. There’s also a fear that if I accept help now, I’ll wear folks out, and eventually the help will dry up from all but my family and dearest friends—basically, those who have no choice. I don’t want to be a burden until I absolutely have to be. And I’m not ready for relationships with my spouse, children, and friends to change to caregiver and care recipient. Still, I don’t want people to stop offering, because it’s good to know folks care. Just please don’t be offended if I shoot you down.

A full emotional bucket. I know this disease is really hard for my family and close friends, and when I share my feelings and fears, it surely makes it harder. So, I appreciate more than I can say the people who are willing to walk this road close beside me. Every now and then, someone articulates to me that it’s difficult. That’s very hard to hear out loud. And it puts me in a position of caring for the emotions of the other person, even if for a short time. My bucket is chock full of my own cancer-related emotions; adding someone else’s causes a messy overflow. In relationships that are based on give-and-take when it comes to sharing openly, it feels terribly unfair for me to say I can’t handle hearing someone’s feelings or fears about my disease. But that’s the reality of it. Share everything else. Spout off about nearly any other topic. Rant, cry, fuss to me about any other life situation. But when it comes to feelings about my disease, I need folks to pour those into another person’s bucket.

These are just some of the things that run through my head in an average week. The ones I’m willing to articulate anyway. There are other thoughts and emotions that cut far too deep to say out loud, or even acknowledge to myself. I leave those at the bottom of the bucket as often as I can.

A Desire to Do Some Small Thing

I know that’s a lot. If you’ve gotten to this point, you are either a really kind friend or really interested in this topic objectively. I know I’ve said many of these things to some folks, and blogged a bit on these themes before. But I recently joined an MBC support group on Facebook, and I’ve realized that my thoughts are not unique, so maybe they need a voice again.

I am powerless to rid the world of MBC, but I can string words together. If my words can bring increased awareness or understanding about the MBC journey in my small sphere of this world, then I feel I’m contributing something in the bigger picture.

Maybe you know someone else for whom these words might be relevant. Feel free to share—as widely as you like. Maybe you have questions about something I’ve said—I welcome them and am happy to talk with you. Shoot me a message any time.