In consultation with my doctor, we decided it was best if I file for my company’s long-term disability benefits and stop working so I can focus more on my health—rest more, reduce stress, and better cope with side effects of treatments. I’ve been on short-term disability for about 6 weeks, and that time has shown me that it’s the right move to step away from the workforce.

I have felt a bit better removing the work stresses from my life (though the paperwork mountain that comes with filing disability provides stress of its own), but I’ve also felt a little bit lost. I’ve worked in the same field for 25 years, and it feels strange to think I won’t be doing that anymore.

Many people have told me, “You’re not what you do.” And I believe that. But I also have felt “at home” in the work that I do. I have truly felt I was working within my strengths and gifts, and feedback from managers and colleagues confirmed that. In fact, one colleague recently had a sign made for me with the nickname I picked up on one our projects (at right).

I have derived joy in improving the words someone has written so they can better deliver a message to the intended audience. And there’s been great satisfaction in taking a pile of source material and writing a report, fact sheet, or website that conveys useful information in a way that readers can easily understand and act on. That this work has been done in the context of public health means that what I wrote or edited helped people learn, make healthier choices for themselves and their families, better comprehend complex medical jargon, or access services they need. My work contributed to helping people and communities flourish. It felt like Kingdom work.

So, then, why stop doing it? As with many jobs, mine had deadlines, challenges, quick pivots in scope or direction, crises and rushes, meetings and more meetings, extra hours worked to meet client demands, unrealistic requests from project directors, and expectations that I perform to a certain level. All that led to stress. Pre-disease, that stress was sometimes hard to manage, but every job has stress, so I just dealt with it. And for the first 19 months after my stage 4 diagnosis, I continued to deal with it. Over time, the added stress of disease and medication side effects and frequent doctor visits became too much. Being absent often, not feeling well, and being distracted by any number of things related to my condition made it increasingly difficult to do a high-quality job, and the combined level of stress was surely bad for any healing processes we are trying to bring about. I was having trouble sleeping from worry—about what was on my plate for the next day and about my capacity to do it all, on top of the worry of whether treatments were working or what an upcoming scan or blood test would show.

I feel relief to have made the decision to put my job aside in favor of my health and using my energy for self-care and the care of my family. I know it’s best. I also know that my job title is not my whole identity. But writing and editing certainly IS my vocation. It’s something I feel I need to do, maybe what I was made to do. It satisfies my soul. And I feel that putting words together or finessing others’ words contributes in some way to the world—at least my corner of it.

So now, I suppose the challenge is to find ways to put the gifts I have to use in other ways. To write on my own time, when I feel like it, under no pressure. I know… this blog is writing. But I like the sense of helping when I write something for others or edit another’s work. It feeds a different part of my mind and soul than writing for my own pleasure or to get my own thoughts out of my head. Maybe I can volunteer my editing skills to a nonprofit organization or a small business that needs to communicate more clearly and concisely to funders, stakeholders, or customers.

I’ve also been trying to reframe my treatments, scans/tests, follow-up calls, and self-care (including naps) as my new “job”—doing whatever I can to give myself the best shot at long, quality life. Every month and year I can continue on current treatments gives the chance for medical discoveries to turn the tide on this disease. Hey, if they come up with a new treatment that cures my cancer or keeps it at bay with a few, minor side effects, I’ll be more than happy to go back to a paid, full-time job. All the more reason to find outlets for writing and editing in this new season—to keep my skills up, just in case.

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.

August 18 marked one year since I was diagnosed with metastatic breast cancer (MBC). With this anniversary of sorts, I’m very much resonating with Ecclesiastes 3:1 and 4: “For everything there is a season… a time to cry and a time to laugh, a time to mourn and a time to dance.” At the present moment, it seems those times are coming simultaneously.

In a lot of ways, marking one year with MBC is a time to celebrate. For the past year, medications have reduced the disease, and they continue to keep it at bay. Side effects from the medications have been generally minor. I’ve felt pretty good; no symptoms. And my doctor has been pleased with my status the whole way along. So pleased, in fact, that he sent me off for two weeks traveling through Europe without hesitation. When we booked that trip, we weren’t sure we’d actually be able to take it—so it’s a big “hooray” that we went, and I was able to do everything I wanted, including walking miles (and miles) each day and climbing to the tops of church steeples in three different countries.

At the same time, this anniversary highlights the passing of time. When I was diagnosed, I said I refused to live as though I had an expiration date stamped on my foot. Most of the time, I succeed in maintaining that mindset. But there are moments—sometimes fleeting, sometimes lingering for days—that I feel acutely aware of the conventional prognosis. This one-year mark has brought more of those moments than usual. It’s as though hourglasses were lined up on the day of diagnosis—one for each year of the projected prognosis—and now, one of those hourglasses is empty. And some part of me is mourning that empty glass.

This milestone has come in the midst of two other realities that have unsettled me. My oncologist just retired. I had my last check-up with him last week. For the past year (and before that, during my first bout with cancer), I have put my trust in this man to make treatment decisions that will keep me alive and thriving. He has patiently answered 100 questions, encouraged me, and shot straight with me. He has carefully watched trends in blood results to detect signs of trouble. And he’s been kind and compassionate, treating me like a person and not just a patient. I’m lined up with another doctor who’s highly recommended, and I’m confident he will provide excellent care. Still, there’s some apprehension at this significant change in my health care team (I don’t like change.)

I’ve also had to switch one of my medications due to a rash side effect. The new medication I’ve started instead is supposed to work similarly and have equally good effectiveness at staving off disease progression. But with any new medication, it’s a “try and see” proposition. It feels a bit like starting over with this new drug. It’ll take a couple/few months to know for sure how it affects the disease and how my body responds to it and tolerates it. (I don’t like the unknown.)

At moments like I’ve had recently—when I allow myself to feel sad, weary, afraid, or uncertain—it’s tempting to chide myself for focusing on the negative, especially when things are going so well, considering. And if I share those feelings with others, it’s tempting for them to quickly remind me of all the positives that have happened over the past year. But on this journey, I’m learning it’s OK to both laugh and cry, dance and mourn. The key is allowing myself to be authentic in my emotions—and sometimes that means there will be tears on the dance floor.