Thoughts on Transformation

As a Christian, the idea of transformation is a big thing. I’m involved in lots of conversations and studies about the concept. I hear sermons with this theme at their core many times a year. And I sing songs with lyrics describing the transforming process in many a worship gathering.

Christian transformation, as I understand it, is placing all aspects of your life before God—broken piece by broken piece—and fixing your attention on Him so that, through grace, He will bring out the best in you, revealing more and more of your true self, as God created you to be. (This is a very loose paraphrase of The Message translation of what Paul writes in Romans 12:1-2 mixed with what I’ve learned over the years.)

The concept of changing into a better, fuller, or more authentic version of who I am made to be should seem wonderful. If we believe God is good, He has created all human beings in His image, and we all have a divine purpose for being on this earth, who wouldn’t want to do whatever is necessary to bring about transformation so we can be more our true selves?

Photo by Aaron Burden on Unsplash

Think of butterflies, probably the most common metaphor for transformation. First you’re crawling through life, just hoping someone’s sneaker doesn’t come down you or a bird doesn’t carry you away. Then you go through an amazing transformation and you’re a beautiful, winged creature flitting through the air, alighting on flowers and drinking nectar. (Maybe you’ve seen Disney’s A Bug’s Life and Heimlich’s long-desired metamorphosis.) Shouldn’t we all want to become the butterfly?

But there are some realities of the human transformation process that I really struggle with. Our friendly caterpillar curls up in a chrysalis for its transformation. Life for the creature essentially stops while the changes occur—it doesn’t have to go about its usual activities at the same time. Its sole focus is transforming. And any pain experienced, any ugly stages that happen along the way are out of view of the world.

Unlike the caterpillar, our transformation has to occur in the context of our regular, everyday lives. At the very least, transformation can be awkward, as we adapt to new realizations about ourselves. At the worst, it can be incredibly painful and confusing, as parts of ourselves are stripped away like so many masks, revealing tender places and scars. During that process, we still have to go to the grocery store, get kids on a school bus, function in a job, and relate to family and friends.

It also isn’t a fast process. The average time for a butterfly’s metamorphosis from crawler to flyer is 7 to 14 days. Seems short to us, but some species live only 10 weeks, so that time of transformation is a significant chunk. Likewise, our transformation takes many, many years—in fact, the transformation process doesn’t ever really stop. If we allow it, God is constantly growing and changing us, revealing more of our real selves, revealing more of Himself in us.

Online recently, I stumbled upon a video of a conservator carefully cleaning and restoring a painting, which serves as another good metaphor for the transformation that God brings about. The conservator, with a little cotton swab, gently rubbed the painting, removing decades of dirt, to reveal bright paint colors. He performed this cleaning inch by inch. And once the painting was clean, he repaired tears and other flaws in the canvas and retouched the paint, so the masterpiece could be enjoyed for many more decades. It was a painstaking process, but the painting’s owner and the conservator thought it was worth the effort, no matter how long it took.

On the one hand, the concept of thorough, even continuous, transformation can bring joy and delight—ever growing, ever improving, ever becoming closer to our true self. On the other hand, given that transformation isn’t easy, the idea can also be paralyzing. I’m not sure I really want to start or allow that process.

I would much rather transformation be like the car wash. You pay the attendant, drive in, and emerge with an entire vehicle that’s shiny and clean on the outside. All the grime is washed away in a minute and a half while you sit safely and comfortably inside, watching the suds and brushes do their magic. But, alas, there is no substitute for time and surrender and hard spiritual, emotional, and even physical work.

I read this quote the other day: “For real change to occur, you will always need awareness, dedication, and perseverance. If you are really interested in these things, life will change in meaningful ways.” (Riso & Hudson, Understanding the Enneagram: The Practical Guide to Personality Types, p. 330). I guess that’s the question: Am I really interested in becoming aware of what needs to be transformed, being dedicated to the process of transformation, and persevering through any discomfort that comes with it?

I’m angry at God and I’m not gonna sugar coat it

For months, I’ve said I would love to go away by myself to have time to think and write and read and pray without anything distracting me. Some time for me, and time for God to wrestle with some “stuff” I don’t usually want to wrestle with. This weekend, due to a change in a friend’s travel plans, I got that time. Found myself with an Airbnb rental I couldn’t get a last-minute refund on and thought, why not use it for a personal get-away? So, here I’ve been the past two days in a cozy little rowhouse in a lively neighborhood of Pittsburgh, just a couple blocks from the Allegheny Cemetery.

Earlier this week, during a church gathering, I realized that I am struggling with doubt and questioning so much of what I believe about God. And in this season of living with cancer—and all that’s wrapped up in that reality—I am angry. Angry at God. REALLY angry.

I went for a long walk through the cemetery to enjoy this clear, breezy, spring day. I set out planning to chat with God as I walked. I tried to pray the “right” things. To invite God into my heart, to reveal thoughts and feelings that are destructive or counter to growth in this season of my life. To help me feel stronger in my faith. I even took out my earbuds so I could listen for God.

After walking awhile among the tombstones and monuments, I passed a stone bench near a large tree, right in the middle of things. I felt a strong voice in my head say, “Stop,” but I didn’t want to stop walking. I turned the corner and kept going. “STOP!” Fine… I turned around and sat on the bench. I started to pray but all that filled my brain were angry words. Not fair! What kind of God…? Why not heal my cancer? Why not cure cancer for everyone? How is it OK that I might die young and leave my family? I want to believe, but none of this makes any sense. Prayer doesn’t seem to fix it. Do miracles even happen anymore? Where are they? Where’s mine?!? If you’re able to create whole planets and new animal species and calm storms, how hard can it be to just remove the cancer cells from my body? People say there’s a purpose in suffering—but why does that have to be part of the story????

In my mind’s eye, I shook my fists and kicked my feet at God. I wanted to literally scream at the top of my lungs in anger and frustration and sadness—but being in the middle of a public cemetery with others around, I thought that would be a bad idea—so I screamed in my mind while I imagined beating my fists at anything and everything nearby. As I did, I heard the words, “There it is.” And I envisioned a child thrashing about while her father held her close, taking the hits of her small fist on his chest. I’m not going to say there was comfort in that image. Truth, perhaps. But not comfort. I still feel very far away from God. Or maybe, more honestly, I still want to keep my distance from God—to keep him at arm’s length or on the other side of my emotional fence line.

And I realized on that walk that I’m tired. My heart is profoundly tired from carrying feelings of grief, uncertainty, fear, and more grief related to my disease. My spirit is tired from grappling with these doubts about God and anger at him—and the guilt that comes from the doubt and the anger. I don’t know quite what to do with those feelings or how to get past them or how long it might take if I do. Or if I even want to put in the work right now to do so. So what does that make me? Lazy in my faith? Weak? Willfully disobedient? More guilt….

This morning in the quiet of this little house, I looked back through my past blog posts. Most have ended with a promise remembered, hope restored, questions I’ve found some answers to, or thoughtful questions to ponder further that may lead to greater understanding and growth.

I wasn’t going to write this post. And if I write it, do I publish it????? (if you’re reading it, I guess I decided yes). Because I have no answers. I don’t even have what I think are the right questions. I’m still as angry as I was a couple hours ago. Nothing is resolved. There’s no neat, little bow on this package. And how do I post something like this and then go to church Sunday and sing about God’s grace and hear a sermon about praying God’s will be done when at this moment I don’t really like what that will appears to be for me?

One could say that I have greater awareness of my state of heart, that I’ve opened up and been honest about how I feel, and that’s a good start. Maybe it is. I don’t know. I’m not willing to say I don’t believe at all—the fact that I felt God speaking to me in my mental temper tantrum is evidence that some part of my heart is still connecting with my Creator. There’s just so much that doesn’t seem to make sense—or that doesn’t seem to align with who I thought God was… or, more accurately, who I want him to be… or what I thought my life was supposed to be in Him. (Lord, I believe. Help my unbelief!)

Wear the tiara, and other things I learned on my 49th birthday

Last month, I threw a birthday bash for my 49th birthday—“49 and Fine.” I wanted an opportunity to celebrate my life while I’m feeling really good. It’s possible I’ll continue to feel good for years to come, but there’s no crystal ball with cancer (or, heck with any of life, really), so I decided to do it now, rather than wait for next year’s five-decade milestone.

Having my local friends attend would have been party enough, but I decided to put out the invite to family and friends afar also. And, by golly, most of them were able to come! That night, I was surrounded by many of the people who love me most (despite also being the people who know me best, warts and all). And I learned a few things from that party that are worth remembering.

Wear the tiara. Normally, I don’t love being in the spotlight. But for this event, I wanted to be the belle of the ball. So, I purchased a tiara—which I wore for the whole evening. It was fun to feel like a princess, to realize that all of the fuss was for me. Rather than feeling self-conscious about being the center of attention, I ate it up, and it fueled a deep joy. To be the focus of so much love and care….

People want something to celebrate. Sometimes when I throw an event, I wonder if people are coming out of obligation. For this event, in particular, that was a distinct possibility. Maybe some were there out of a sense of “I should go—who knows if this will be her last party?” That’s fair. I’d be lying if the thought never crossed my mind. And who throws a big 49th birthday party anyway?? Regardless of anyone’s initial motivation, though, folks seemed genuinely happy to be there. And I realized, most people like to have something, or someone, to celebrate—to join in a group that collectively says, “This is a good thing! Let’s eat, drink, and be merry.”

Grown-ups like to play. We had a couple games and silly dances at the party, because, well, it was my party, and I thought that would be a good time. Turns out, Cyndi Lauper was right: “Girls just want to have fun.” (And boys, too). Adults don’t get a lot of opportunities to play, explore, build, goof off, and generally let loose. But try giving them a box of spaghetti and bag of mini marshmallows and telling them to build a castle—and that there’s a prize for the best one. You’ll see all sorts of creativity and shenanigans.

Laughter is the best medicine. Cliché, but true. Being in long-term cancer treatment can get really old. You’ve got appointments to keep up with, tests, medicines, side effects, fear constantly looming. It’s sometimes hard to imagine ever being carefree again. It had been a long time since I laughed as much and as hard as I did at my party. And it felt really good. For the whole party weekend, I almost forgot my lot.

Life can be full of mini milestones. Social convention tells us that really big parties are saved for births, weddings, graduations, new homes, promotions, and “special” birthdays. But there are lots of other little moments in every day that can bring joy, love, and appreciation. Why not celebrate those moments in some notable way? OK, maybe not with a rented hall, disco ball, and open bar…. Instead, how about laugh with a friend, raise a glass, send a thank you note, utter a prayer of gratitude, or record the moment in a journal (or a blog)?

I don’t know what my next birthday will bring. In the meantime, I’ll try to be more mindful of things to celebrate and opportunities to play and laugh. And I might just drag out the tiara and wear it to the grocery store some Tuesday evening, for the sheer fun of it!

Clinical Trials: You Don’t Know If You Don’t Try

Early in January, I learned that the cancer in my liver has grown—“substantial progression” the PET/CT scan results say. Two doctors, however, have said it’s still only a fairly small part of my liver affected; I like the oncologists’ interpretation better than the radiologist’s.

This progression was not entirely a surprise. The monthly tumor marker tests had been rising slowly over the course of several months, so we figured something was going on. Now we know and can chart a course forward.

My oncologist recommended me for a clinical trial that looks like a good fit given my type of breast cancer, my treatment history, and my current health status—that is, still symptom free, not showing any decline in liver function, and generally feeling good, minor side effects from medications notwithstanding.

So, a few days ago, I met with a new oncologist, the principal investigator of clinical trial NCT03280563—A Study of Multiple Immunotherapy-Based Treatment Combinations in Hormone Receptor (HR)-Positive, HER2-Negative Breast Cancer, also called MORPHEUS-HR+ Breast Cancer. Sounds like something out of “The Matrix.” The study is being conducted in 22 cities, including Pittsburgh. It’s being fielded out of Hillman Cancer Center and UPMC Magee Women’s Hospital. I’ll be going to Magee.

Immunotherapy hasn’t worked well in slowing or reversing progression of HR-positive, HER2-negative breast cancer (like I have), so this test is exploring the combination of an immunotherapy drug with one, two, or three other drugs that are already used regularly or have shown promise through other studies to stop cancer growth, kill cancer cells, or otherwise disrupt the disease process. The hope is the other drugs will boost the effectiveness of the immunotherapy. The study will look at how safe the drug combos are and how well they work, as well as which doses seem to provide the best outcomes (if any) for the least amount of adverse events and side effects.

In the big picture, the goal is to determine if one or more of these combos offers another weapon in the arsenal against this disease. In the small picture—that is, my personal disease—the hope is that whatever treatment arm I’m assigned to will stop the cancer from progressing further for awhile or, even better yet, knock it back and shrink it.

I still have to complete the screening process that’ll include a liver biopsy (to make sure the tumor hasn’t changed in characteristics and also to get a sample for genetic testing) and several blood tests to confirm I’m a good fit. The doctors fully expect I will be. I should know for sure in a couple weeks. I’m excited about the possibilities.

While talking with folks about this recent development, I’ve realized that not everyone understands fully what a clinical trial is all about, so I thought I’d provide some basic Q & As.

What exactly is a clinical trial?

A clinical trial is a type of research that studies a test or treatment given to people. It’s one of the ways scientists make progress in finding new disease treatments or cures. A trial could study a brand new treatment or an existing treatment that’s used in a different way or in a different combination. Clinical trials study how safe and helpful tests and treatments are—often in comparison to the type of treatment that’s usually given for a condition (called the “control). When found to be safe and helpful, the studied treatment or test may become tomorrow’s standard of care. 

The National Comprehensive Cancer Network has a really good overview of clinical trials, written in easy-to-understand language, if you want to read more.

Couldn’t you end up getting a placebo and getting no benefit?

A placebo is an inactive medicine that’s given to a control group in a trial when there isn’t already a standard of care to which a new treatment is being compared. The trial I’m on doesn’t have a placebo. It’s comparing the new combo treatments to an existing standard of care (Faslodex)—that’s the control.

Participants in the trial are assigned randomly by a computer to one of the groups. I could end up in the control group. Initially, I was concerned about that because it seemed like a lesser treatment than I had been getting (I was on two meds, and the control is only one drug). But the research oncologist assured me that control medication should be beneficial by itself. And if it’s not, we’ll know quickly and can pull me out of the trial. My regular oncologist had already mapped a new treatment plan outside of the trial, so I’d either start that or we’d re-examine options.

Although the assignment to groups is random, it is not blinded. Participants will know which group they’re assigned to. I’ll know exactly which medication(s) I’m getting.

What if the new drugs don’t work? Or they work but greatly reduce your quality of life?

That’s a legitimate possibility. It’s a test—so we don’t know whether these new drug combos will work at all and if they do, how well or for how long. And we don’t know if they’ll cause side effects that are tough to live with or if they’ll be hard on the body in ways that make it unsafe to continue taking them. But, I’ll be watched really closely. Scans will be scheduled about every 6 weeks, and I’ll have blood work every couple of weeks. If there are signs of trouble, we’ll know in a matter of weeks. And if I feel uncomfortable about anything at any time, I can pull out of the trial.

If the cancer progresses on the trial drugs, I could be offered a second treatment stage with different medications. Or I could choose treatments outside the trial. In the latter case, I’d go back to my previous oncologist and continue with plan B he and I discussed before.

Does going into a clinical trial mean you’re out of “regular” treatment options?

No. Clinical trials are not a last-ditch effort. In fact, some women with metastatic breast cancer have gone into clinical trials as their first line of treatment. In the case of this trial, to be eligible, I had to progress while on Ibrance or Verzenio but NOT yet had Faslodex (the control drug) or any chemo. In other words, I had to be pretty early in the treatment process. There are many other options still available to me outside of this trial. I’ve heard of many women going through a dozen or more lines of treatment; I’ve only gone through the first line.

Is the treatment considered “experimental”? Will your insurance pay for it?

Clinical trials have sponsors (often drug companies or organizations that receive federal grants) who pay for the trial’s medications and many other associated costs. And before I start any tests of treatments, the trial staff where I’m participating will check with my insurance company to make sure there aren’t any financial surprises.

Are the risks really worth it?

Everyone needs to decide for themselves whether participating in a clinical is worth the potential risks. You’re taking medication that hasn’t been proven. It might not work. It might cause unexpected and even serious side effects. That’s a lot to consider.

I’ve weighed the pros and cons and decided it IS worth it to participate. If the treatment I receive in the trial works, I’ve added a treatment option that wasn’t on the list for me before. If it doesn’t work, it’s a small setback but not one that should have a serious impact on the disease.

Regardless of the outcome, I’ll be contributing to progress in learning what works, or doesn’t, to fight metastatic breast cancer. It makes me feel like I’m doing everything I possibly can—both for myself and for the greater good.

Etched with Hope and Faith

Right after Thanksgiving, I did something I said I’d never do. I got a tattoo. It’s on the inside of my right wrist, where I can see it throughout the day, and others will easily see it, too.

Until recently, I thought tattoos were kind of gross. Why would you mark up your body with something that didn’t come off? What if you changed your mind? And why would you put yourself through pain unnecessarily?

But the thing is, I already have several indelible marks on my body—scars from surgery, a scar from a biopsy, and tiny positioning tattoos from radiation. Those marks signify negative stuff. And I didn’t choose them.

I had a growing desire to add some marks to my body that I did choose, marks that signify positive, meaningful things.

So, the tattoo—a simple red balloon and golden, fall leaf.

The balloon stands for hope. It’s taken from a figurine my dear hubby got me two decades ago when I was feeling really discouraged. The figurine is of Piglet (from Winnie the Pooh) grasping on to a large, red balloon with all his might. That figurine has long brought me hope and encouragement when I’ve needed it. And I love the words of Winnie the Pooh that are associated with it: “Nobody can be uncheered with a balloon.” True, indeed. As an added touch, the tattoo artist put a loop in the balloon string. It was a simple design flourish, but that detail reminds me of life’s twists and turns. You’re hit with something tough and thrown off course a bit—“thrown for a loop”—but you find your way back around and continue on with life.

The leaf reminds me of my faith. There have been several instances in which I’ve felt incredibly close to God. Most have happened in the fall. I blogged about one of those experiences in fall 2017. When I see the leaf, I remember that God is walking with me through this cancer journey, as He does through every aspect of life. The Lord is close at hand, and the leaf tattoo couldn’t get any closer to me—it’s etched on my skin! Just as the tattoo artist did with the balloon, she included some elements that have come to mean more than the simple design details she intended. The leaf has three veins—for Father, Son, and Holy Spirit. Each vein has three little off-shoots. In the first set of three, I see my husband and two sons. The second set of three reminds me of my relationship with God, with others in my community, and with the world. And the third set of three I see as a reminder to reflect on the past and its lessons learned, to live fully in the present, look to the future and its promise.

This tattoo will almost surely be my only. As my mother-in-law said about very painful things, “It hurt like a boo-boo.” But it was worth it. Each time I look at it, I think of what the images stand for, and it brings me joy and encouragement. Several people have also noticed the tattoo and asked about the meaning behind the images. Such encounters give me an opportunity to tell my story, acknowledge my faith, and remember the best and most important things in my life.

Living with Metastatic Breast Cancer: A Glimpse Behind the Curtain

behind curtain

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.

A Personal Pep Talk

The past few weeks, I’ve felt my resilience falter a bit. After a new medication brought some icky side effects, a non-cancer-related health issue caused some discomfort and inconvenience, and a project at work caused a prolonged time of stress, I was feeling rather whiny and weak in spirit. I sometimes wanted to just curl up under a blanket and hide. I started thinking of what lies ahead in battling cancer and wondered, if I feel this puny and discouraged in the face of fairly minor stuff, will I have what it takes to face the real tough stuff down the road—not only physically, but mentally, emotionally, and spiritually?

Then I remembered: This is not the first situation to challenge my heart, mind, soul, and strength. And I’m still standing.

My heart…

  • Has been broken by someone I thought loved me but didn’t.
  • Has grieved the death of those dear to me… grandparents, parents-in-law, friends.
  • Has stung with guilt at something I’ve said or done that hurt others.
  • Has watched, choking back tears, as my firstborn walked off to start his life at college.

And yet, my heart still beats, still loves, still hopes, still sings, still feels joy, still revels in the love of family and friends.

My mind…

  • Has made decisions that ultimately led to great disappointment.
  • Has judged wrongly the character of someone.
  • Has made mistakes that led to embarrassment.
  • Has failed miserably at a new skill or endeavor.

Yet, my mind still imagines, still dreams, still comes up with good ideas, still wrestles with choices, still dares to try new things.

My soul…

  • Has gone its own way, wandering far from God.
  • Has wondered where God is in times of trouble.
  • Has questioned his will—for me, for those I love, for the world.
  • Has been hurt by the actions of a fellow believer.

Yet, my soul still longs for relationship with Christ, still trusts that God is sovereign, still believes in the power of prayer, still desires deep connection with brothers and sisters in Christ.

My body…

  • Has recovered from broken bones and stitches.
  • Has twice experienced the pain of childbirth.
  • Has endured biopsies, surgery, and radiation.
  • Has felt like a pin cushion as a result of countless shots, IVs, blood draws,  and more blood draws.

Yet, my body still breathes, still stands and walks and bends, still has strength to climb and carry, still has the gumption to exercise and travel.

So, cancer treatment…? Yeah, I’ve got this! And in those moments when I’m not so sure (again), I’ve got people around me who will spur me on and even carry me along. Plus, now I’ve got this little blog post to serve as a pep talk when I need it.

The One-Year Mark

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.

Spring brings a fresh crop of questions

With spring’s arrival, I find my “pondering” is more frequent than usual. It’s as though the warmer weather and sunny days have awakened synapses in my brain that have lain dormant over the long, cold winter. Many of the thoughts and questions that fill my head are triggered by what I see in my own backyard as nature wakes up around me.

New life co-mingles with the old and the dead. Many trees have both buds or flowers and a few straggling dead leaves that have held on persistently through fall and winter. New blades of grass grow up and around broken branches deposited on our lawn by winter’s winds. I ask myself: What old or broken things in my life do I need to clear out or clean up to make room for healthy, new growth?

flower and thorn

But not all that grows is desirous. Prickly brambles creep up from the dirt alongside daffodils and hyacinths. Oak saplings appear in areas designated for manicured flower beds. And vines twist themselves around fences and railings, growing more insistent with each lengthening day. Left to their own, those little plants can eventually take over and do damage. I wonder: What unhealthy vines and brambles have I allowed to grow in my life that threaten what I’m intentionally growing or building?

Not all plants make a comeback after a long winter’s nap. The lilac bush in our back yard has long struggled, with fewer and fewer branches each year yielding leaves and blooms. Each spring, I’ve carefully pruned the deadwood, hoping to give the bush one more chance. But this year, nearly all the branches are bare, and it seems time to finally remove it and plant something else. In my own life: What “dead” thinking or behavior do I need to chop down and replace with a fresh attitude or habit?

As I sit on the front porch, papa bird flies back and forth to the nest he and his mate have built in the eave. He brings bug after bug to nesting mama bird—so industrious and diligent, undeterred by distractions, a singleness of purpose. I reflect: What do I pour such energy and focus into? And are those things most deserving of such energy?

This spring, what thoughts and questions are sprouting for you? What do you need to think about afresh?

Peace through tears

Last week, I took a friend for chemo treatment. I felt some apprehension leading up to it. Caregiving is not one of my top gifts, and I expected to feel some sadness in witnessing my friend’s suffering at the effects of the drugs and in remembering when I took my late mother-in-law for her treatment.

So I asked some others to pray for me, and I too asked God to give me peace in this small act of service. As I picked up my friend, I really did feel at peace, and that sense of calm remained through her appointment and the return drive home.


The moment I walked off her porch, however, tears welled in my eyes. I fought them as I made my way to the car and shut the door. My inclination was to wipe the tears away (along with the feelings behind them), drive home, and go on with my day. But they were pretty insistent, so I gave in to the waterworks and had a good cry for a few minutes.

When I stopped, I chided myself for the lapse in my calm demeanor. My tears, runny nose, and red face served as accusers—God had answered our prayers and had given me peace, but had I allowed it to slip away. Once again, I thought, I’d taken my eyes off God and focused on the bad and the sad. Shame on me.

As I’ve thought more about my reaction that day, though, I’ve wondered more broadly about my understanding of what it means to be “at peace.” Is it really just feeling calm in a storm? Contentment in the midst of sad things? Feeling A-OK when something is most definitely not OK? Saying “it’s all good” when facing tough situations? I think that’s how I’ve always viewed peace: as an absence of—or perhaps, on some level, an ability to deny—any emotion that’s not a warm, fuzzy feeling.

But God gave us the full spectrum of emotions, so it seems strange that in granting us a “peace that surpasses all understanding,” God would disconnect us from some of those emotions as though they were invalid or unnatural. Perhaps, instead, his peace comes amid those feelings—not replacing or cancelling them out. And perhaps I’m focusing on the wrong word all together. Maybe instead of asking God for peace in a stressful circumstance, I should ask God to help me be aware of his presence in it, to help me authentically feel all the resulting emotions, and yet be assured that, in the words of Julian of Norwich, “All will be well, and all manner of things will be well.”