Over the past month, I watched as two sparrows crafted a nest atop our porch pillar, and then mama bird sat patiently on a couple of eggs. Another sparrow would swoop in from time to time to try to take over, and papa bird would fight him off and then chirp noisily for awhile. It was like an episode of Wild Kingdom.
I knew it was getting close to hatching time, so I’d been watching anxiously for tiny beaks to pop up over the nest edge. Yesterday, we returned from church to find a tiny baby bird lying on the porch. He’d either fallen or been tossed out of the nest. Upon inspection, we found he was still alive, wriggling on his back. We sprang into action, grabbing gloves and a step ladder to put him back in the nest. Then crossed our fingers that mama and papa bird would return and tend to him.
The parents did return and inspected their youngster with surprise, then mama snuggled up next to baby. Later in the evening, I was pleased to see mama bird feeding not just the little guy we rescued, but a sibling who had also hatched. I went to bed with hope restored for our resident bird family.
So, it was heartbreaking this morning to peek out the window and find the nest missing from the pillar ledge. Both it and its sweet, downy occupants were lying on porch. This time, the babies were still and lifeless. I put on some gloves and carefully picked up their bodies, cooing softly to them as if they could hear me and trying not to cry as I loaded them into a bag along with the discarded nest.
In that moment, they ceased to be simply two tiny sparrows that had fallen on hard luck. They became an illustration of the uncertainty of life and the cruelty of death, evidence of The Fall, and proof that things are not as they should be.
One might accuse me of being overly sentimental or over-spiritualizing. “Seriously? They were just a couple of common birds.” But they were two of God’s creatures, two new lives in the world, created for a purpose, even if only to add their songs to the sounds of our neighborhood and eat some bugs. Matthew 10:29-31 (New Living Translation) says, “What is the price of two sparrows—one copper coin? But not a single sparrow can fall to the ground without your Father knowing it.” They may be common, but they are not unimportant to God.
This evening I find I’m still sad about the baby birds. Maybe I just have a really soft spot for nature. Maybe it’s because we’re dealing with our own boys “flying the nest” in various ways. We moved our older son this weekend into his very own apartment for the summer, and our younger son is about to graduate and head to college. I think, in part, it’s because for several weeks, I watched with anticipation, and what I had waited for ended in an entirely different—and undesirable—way.
And the circle of life had skipped several steps for those little birds. In this season of my own life, as I deal with illness, that concept feels a bit unsettling. Still, I know God’s with me in this season, and I, too, matter to him. The second part of the Matthew passage goes on to say: “The very hairs on your head are all numbered. So don’t be afraid; you are more valuable to God than a whole flock of sparrows.” As much as God cares for the sparrows, he cares even more deeply for me.
Our neighbors are having their driveway replaced, which requires the workers to use an oppressively loud jackhammer to break up and remove the cracked and crumbling existing surface to make room for the new.
As I’ve listened the past two days to the hammering sounds and watched the progress being made, I’ve been struck with how much that process mirrors human life whenever change is involved.
Whether you choose change or it chooses you, it’s usually disruptive. Like the jackhammer, it can feel violent and jolting. You may feel substantial parts of yourself or your life being chiseled away. Things long hidden may be unearthed, leaving you feeling violated or laid bare. What was once solid and firm may be turned to dust. And whether you instigated the change and are the one operating the jackhammer, or some other person or force is wielding that tool, there’s no escaping the noise and rattling.
Just as the sounds next door have disturbed my peace and given me a headache, change in your life can be disruptive and messy for those close to you. Rarely do we experience a shift in some important aspect of life without it affecting those we love or spend a lot of time with. Our attitude or outlook may be different, causing an adjustment in relationships. Our behavior, health, or ability may change, causing an adjustment in life rhythms. Or change may involve our departure from an environment or experience, leaving others to fill in behind your or just to miss your presence.
Sometimes, changes are ultimately for the good. Often they are. And even for those changes that seem to have no redeeming qualities, there is often some blessing mixed in—you just might have to look a little harder for it as you sift through the rubble.
And the disruptions that come with change don’t go on continuously or forever. Like the worker wielding the jackhammer next door who stops from time to time to take a break, so too do we get moments of respite even in the midst of the most complicated, enduring periods of change or unrest. These rests allow us to gather our strength to pick the jackhammer back up or get ready for another session of chiseling and chipping away.
Consider: Where in your life do you need some jackhammer action? And if you find yourself subject to jackhammering that you didn’t choose, how can you see the potential for good or renewal?
I was sitting on the deck yesterday, enjoying beautiful weather and blue sky, having quiet time with God. I was trying the practice of just sitting, being still, and simply paying attention to God’s presence and what He might have to say to me. No prayer list or agenda. Just still and attentive.
Before long, I was annoyed by a military tanker plane that flew overhead. The Pittsburgh airport also houses the 171st Air Refueling Wing, so it’s not unusual to see and hear giant planes flying by several times as the pilots practice. Typically, I’m fascinated by those planes. But that afternoon, I was seeking quiet, stillness. It was bad enough I heard chainsaws, road traffic, people talking as they walked up the sidewalk. That plane was loud and seriously disruptive.
On its second or third pass, I looked up to the sky in irritation and stared at the plane until it was out of view. The tanker plane is massive. Giant engines propel it through the air. The power it must take to get that plane and its fuel cargo into the air and keep it there… The power… Power… Power…
As I sat with that word bouncing around in my head, I felt God whisper to me, “You’ve been trying to do so much by your own power. Why not call on mine?”
I looked again at the sky and the nature on display in my yard and the neighbors’. The bright sun warming the earth. The wind blowing clouds across the heavens. Buds giving way to leaves. Birds flitting from tree to tree. Lush new grass covering the ground. A bee buzzing past my view. All of these were created by the Lord. In His power, He cares for them all.
God created me, too. And He cares for me dearly. He knows my struggles. In His power, he will carry me through them (if I let Him).
Turns out my “quiet time” with God wasn’t so quiet. But because I was open and attentive, He met me there anyway. And He spoke to my heart—even through what I initially thought was a distraction.
Have you not known? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He does not faint or grow weary; his understanding is unsearchable. He gives power to the faint, and to him who has no might he increases strength. Even youths shall faint and be weary, and young men shall fall exhausted; but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint. – Isaiah 40:28-31
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?
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?
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!)
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!
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.
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.