September 21

(This was a brief update I posted on Instagram…)

Okay, I’ve guzzled two cups of organic black decaf low-acid mold-free coffee and am ready to attempt an update. ? I’ll say it again: There’s no vocab for this journey, so I just kind of stab at words and pray they make a wee bit of sense.

I’ve had only one infusion since April—due to my increasing intolerance of treatment + Long Covid + major dental work (chemo bullies teeth!). After months of prayer and anguishing through pros and cons, I decided in late July to end all treatment, at least for the foreseeable future. (When it comes to these decisions, it feels like your options are: “Would you rather jump out of a plane without a parachute or be thrown into the ocean tied to an anchor?” ?) I knew the odds were great that the cancer would take over within months, but I decided to cross that bridge once I came to it.

However, as soon as I made my decision, the cancer made a comeback. I decided to do one more infusion, get a PET scan done, then make a revised decision based on those results.

During the pandemic, I was asked before PET scans, “Did you recently have Covid?”—because Covid can remain in the lymph nodes and look just like cancer. Lo and behold, the “cancer comeback” was in fact Covid’s perfect mimicry. The infection I contracted June 1 not only was acting like cancer but also created a pericardial effusion (fluid in the sac around the heart that can lead to heart failure).

What a rollercoaster this continues to be! I’m shocked and overjoyed that God continues to hold back the cancer in my spine, hips, ribs, chest, and lymph nodes! It’s also a heavy reality to not know what to do next: my body is intolerant of treatment, I’m utterly exhausted, and it’s complicated and even dangerous for me to get sick.

I’m still on my rigorous naturopathic protocol. When my doctor said, “Whatever you’re doing, it’s working!” I laughed and said, “Well, I do rub castor oil on all my metastases.” ? (I omitted detailing my myriad other strange practices. Ha!) But I quickly added, “I absolutely believe God holds my days and his hand is on this cancer, holding it back till it’s time for me to go Home.”

I believe that with all my heart, and in all the complexity and confusion of this journey, that is a solid truth I can rest in. “All my days were written in your book and planned before a single one of them began.” (Ps.139:16)

One of my prayers is that I won’t make too much of terminal cancer—that I’ll be able to communicate the experience without magnifying it. My story is so much more than this suffering. But it’s a tricky balance, and I’m not sure I’ll ever get it right. I do know that there is so much life to be lived today, even within these physical limitations and deep weariness. There are fresh new mercies and undeserved joys wherever I turn. The pic above is one of those joys: two of my besties visited last month. ?

Posting with the prayer that this will encourage some of you in your own hard…

~ ~ ~

August 30

“She smiles a lot. Her zygomat muscles are strong,” my dentist said matter-of-factly to his assistant. I lay there, mouth cranked wide open, as Dr. Jacobsen twisted and wrenched out a second decaying molar (compliments of chemo).

“She must be happy,” his dental assistant chirped in reply.

I nodded and caveman-grunted an affirmative. I am happy. But it’s a costly kind of happiness. I wish my mouth wasn’t out of commission. There’s a story behind this smile . . .

~ ~ ~

Elisabeth Elliot asked,

The past three months have been dark and heavy. I’ve been short on words. God has removed the intimate experience of his presence and let me grope in the darkness, clawing for grace to make it one moment at a time. It’s been physically grueling as well as psychologically exhausting. As long-term treatment’s ever-compounding side effects have demanded more and more of my body, I’ve grappled with the impossible decision, Is it time to end treatment since I’m becoming increasingly intolerant of it? How much more can I take?

(By the way… I have a standup comedy bit for this: “Would you rather jump out of an airplane without a parachute or jump into the deepest ocean with an anchor tied around your neck? How to choose, how to choose…”)

But facial muscles don’t lie. I do smile a lot and laugh almost as often—as many of you well know. 😉 (Fun fact: I was teased in elementary school for how much I smiled, and I’ve had many people tell me over the years, “I thought you were fake when I first met you” and “You don’t have to smile all the time.” I just tell them the smile is part of the package deal. Ha!) All that to say, I wish I could communicate my smile and laughter here as I write about these heavy realities. Wish I could talk about death with you, shed a few tears, then crack a corny joke to make you snort (‘cause you know that’s how I roll). Over these summer months I’ve wrestled through countless paragraphs trying to update you all, but every time I’ve ended up thinking, Sheesh. That’s completely depressing. I’ll try again later… 😉

The thing is, cancer is utterly confusing—akin to a rickety old wooden rollercoaster that has so many twists and turns it would require a play-by-play update to make sense of the experience: it’s a slow uphill grind, it’s a fast downhill plunge, it’s blinding sunshine in the face, it’s an impenetrable dark tunnel, it’s an upside-down head rush, it’s a right-side-up scream fest. I truly don’t know how to make sense of this phase of our journey apart from an hourly update (which, helloooo, no one wants).

But where I lack the vocabulary to write well about this present suffering is where I continue to find God’s Word “perfect . . . trustworthy . . . right . . . radiant” (Psalm 19). The language of Scripture is the only sufficient language for suffering. It’s the language that tells the story of Love who went to the cross for us so that our suffering would never be meaningless.

And so I cry out to God using his own words. In recent weeks it’s been Psalm 116:

I love the Lord because he has heard
my appeal for mercy.
Because he has turned his ear to me,
I will call out to him as long as I live.

The ropes of death were wrapped around me,
and the torments of Sheol overcame me;
I encountered trouble and sorrow.
Then I called on the name of the Lord:
“Lord, save me!”

The Lord is gracious and righteous;
our God is compassionate.
The Lord guards the inexperienced;
I was helpless, and he saved me.

As I’ve been meditating on and memorizing and crying out these verses, I’ve also been studying First John. One of John’s recurring themes is “remain in God!” My heart burst to find that the original Greek word here for “remain” (meno) not only means “to stay,” but also, “to continue to be present.” As I meditated on both this and Psalm 116, this was my thought process:

The psalmist knew he would need to call out to God for the rest of his days. In other words, he knew life wasn’t going to get easier… so he would need God to the very end.

God is not sparing me from continued suffering, so I too will need to cry out to him for the rest of my days.

Crying out to God is a way of staying present with him. 

So God is continually letting me suffer to make sure I remain in him (and don’t remain stuck in my self-sufficiency, pride, and independence), which is the best thing God could do for me and for those I get to love for him.

A few of you will remember that when Jeremy was 18 months to six years old, he suffered monthly high fevers, rashes, joint pain, mouth sores, stomach upset, and an acute cough (eventually diagnosed as PFAPA syndrome). He spent hours and days at a time in my arms. All Jeremy could do was cry out in his suffering, and all my mama’s heart knew to do was comfort him in any and every way possible. Although those years often felt traumatic, I marvel at how Jeremy’s suffering allowed him to experience plentiful security and attachment, comfort and love early in life.

In a similar way, I’ve spent so many years crying out to my Father and being held in his arms that I’m deeply persuaded of his love, his comfort, his safety, his goodness, his wisdom, his nearness. And so even on a journey that often feels cruel and grueling, lonely and overwhelming, I’m convinced all over again that God has entrusted to me, and to Eddie and Jeremy, an exquisite gift delivered via terminal diagnosis. I know to the marrow of my soul-bones that “this momentary light affliction is producing for us an absolutely incomparable eternal weight of glory” (2 Corinthians 4:17).

Which is why my zygomat muscles are strong. 😉 I can still smile. And laugh. Crack jokes. Not because I’m good at facing death (oh boy, I’m not), not because I’ve got my act together (mercy, if you could hear the things that come flying out of my mouth or see the idols I often turn to in my pain)—but because my Father is holding me tight and filling me with his love and joy and hope and purpose.

~ ~ ~

For those of you who wonder how the heck I can claim to struggle with words and then write so many, here’s a summary I probably should have placed at the beginning. Ha! I had a break from treatment for four months (due to severe side effects, long Covid and its complications, as well as major dental work). In July I finally decided to end all treatment for the foreseeable future (and what a glorious two weeks of relief and rest came with that decision!). I thought that once the cancer began to grow again—perhaps in a couple of months?—I might have some renewed strength and increased capacity to continue treatment. However, within two weeks of my decision, the cancer was growing again, forcing me to return to the drawing board. (Again, terminal cancer is so confusing and the decisions are so crazy!) At this point, we’re taking one test and appointment and infusion at a time, asking God for wisdom just as we need it. My first infusion back (8/15) was not a good one, so we’re truly taking things day by day right now. I have a lineup of significant tests and appointments in the next couple of weeks, so I appreciate your prayers for clarity and peace and joy, as well as eyes to see who I can love for Jesus every time I step foot in that cancer clinic. It’s never a mistake when I find myself there, no matter how hard it is to show up.

~ ~ ~

And friends, you know I love hearing how I can pray for you too (even though I’m perpetually awful at responding to messages, argh). Our cancer journey is not the only hard thing going on! So many of you model for me the very things I write about in these updates.

I love and appreciate you all more than you know…

Colleen

__________________

March 1

My sweet friends!

I’m sitting here at my desk—a beautiful little workspace tucked into the corner of my bedroom—with two happy houseplants and a list of writing projects that far exceeds my capacity at the moment. Between sips of hot black decaf coffee, I’m asking myself again, How do I make sense of this stage of our journey? How in the world do I find words for it?

So maybe I’ll start down a rabbit trail and work my way backwards . . . But if you’d like to bypass my verbosity and skip straight to the end, you’ll find a bulleted list with some treatment deets.

~ ~ ~

I don’t remember when my obsession with World War II began, but I’ve devoured more books and movies on the subject than I can count. Like many of you, I’m captivated by the sweeping magnitude of suffering as well as heroism of WWII. Currently I’m reading both Hitler’s Boy Soldiers and The Betrayal of Anne Frank (light bedtime reading)—the first, a story of a 9-year-old German boy whose parents naively enrolled him into Hitler’s elite youth program; the second, a cold case investigation to find the betrayer of a 15-year-old Jewish girl and her family.

I’m both appalled and fascinated by the cultural influences, the religious nuances, the geography and military tactics, the technological advances and the dehumanization that made up a war that spanned the globe. But I’m most captivated by how people responded to the suffering as it unfolded over many years—from the first days of food rations to the final horrifying days of Auschwitz, to decades after the war as countries rebuilt leveled cities and survivors attempted to reenter society with undiagnosed PTSD. 

Suffering of any shape or size is still suffering. But what happens when suffering is long? — when a German boy-soldier doesn’t get to see his parents for ten years? when a teenage girl spends two years cramped in a dark, silent annex with eight other people—only to eventually be captured and sent to die in a concentration camp? While none of us have experienced anything like the horrors of WWII, wouldn’t we all agree that it’s the gravitas of sustained suffering that resonates with us? 

~ ~ ~

It’s been almost 6 years since I first discovered that ominous pea-sized lump in my right breast—and exactly 4 years since we finished treatment for Cancer Round 1. It’s been 23 months since we heard the cancer was back, and 21 months since we heard that the cancer was, in fact, incurable. I’m fast approaching my 50th chemo infusion, I’ve earned 11 scars from 6 surgeries, and long ago I gave up counting my scans and blood tests and doctor appointments. 

YET, even while the scope and scale of “the long goodbye” can be deeply wearisome and often grueling—I can’t fathom living apart from this terminal diagnosis now. Isn’t that bizarre? Death has become an ever-present companion whose nearness makes everything feel both weighty with beauty and as fragile as a soap bubble. And while Death is still every bit the last enemy, he’s ultimately been defeated and can no longer enslave me with his terror (Hebrews 2:14-15), so his presence serves a purpose. I’m convinced that a palpable sense of our mortality can open us up to greater eternal realities, including weightier joys and fuller freedom and an ever-increasing experience of Jesus. (Perhaps it’s our first-world sense of invincibility that’s an even greater enemy than death?) 

~ ~ ~

I think the strangest thing about this phase of our journey is that the three of us carry this heavy reality—like a pair of fifty-pound dumbbells—into our workdays and school classrooms and sports practices and get-togethers—as if it’s normal to lug this deadweight around (hm . . . pun not originally intended, but it def works). And while we may have gained some muscle memory for how to talk about death as a family or push through chemo’s side effects or prepare for the unthinkable, there’s just nothing normal about it. It can be lonely even as we lean hard into community. It can be exhausting even as we experience God sustaining us with gifts of joy and laughter and many, many daily mercies. 

And so, like many of you (because here’s me on repeat: cancer doesn’t have the corner on the market of suffering!)—here we are, holding both grief and gratitude in hand as God holds us together. Yes, I am weary but oh do I feel so loved by Jesus. So treasured by him. What a privilege it is to suffer in his name and see him “acting on behalf of those who wait for him” (Isaiah 64:4). 

I wish I could share all the ways God has “acted on our behalf,” but I’ll just highlight one for now: we’re part of a precious church community here in the Boise area where we are being lavishly loved and cared for, and where we are getting to love and care for others even within our limitations. Yesterday morning our church pastors and elders took time out of their (insanely busy!) schedules to sit with our family, anoint me with oil, lay hands on me, and pray over the three of us. I can’t begin to describe how meaningful and encouraging it was, how deeply strengthening. (I had both tears and snot running down my face.) We have been so well loved by them, by our larger church family, by you all, and we are constantly aware that we just couldn’t do this without you. You’re helping us carry these heavy dumbbells around—even as you carry your own heavy burdens. You never cease to amaze me.

You know by now that I love hearing about your own hard, love praying with you and for you in it. 

Thanks for being our people. We adore you and thank our God for you.

Colleen (for Eddie and Jeremy too)

~ ~ ~

For those of you who like details, here’s a recap. Nothing too new here since my last update, but it means so much when you ask for specifics, so I’m always happy to share….

INFUSION SCHEDULE
Maintenance chemo infusions are still every three weeks. This Friday is my third consecutive infusion since my glorious holiday break. 🙂 The more consecutive infusions I have, the greater the cumulative exhaustion and side effects, and the more quality time I spend at home in my recliner. Ha! Because of this, I’m committed to continue taking “chemo breaks” every six months or so—to come up for air and live a little larger (like I did in December and January!).

SCANS
Yesterday was a routine scan to make sure my heart is still strong enough to handle maintenance chemo. I only get PET scans or MRI’s when I have symptoms (pain at the site of metastases in my spine/ribs/hip/chest wall/lymph nodes; dramatic weight loss, etc.). My last PET scan showed that the cancer is not currently growing. PRAISE GOD.

WHAT’S AHEAD
When the cancer eventually finds a pathway around the maintenance chemo, I’ll need to go back on “killer chemo,” the kind that makes me bald and super sick. To be honest, I’m not sure how my body will be able to do that for a third time, but there will be grace when the moment comes. For now, it’s an indescribable gift to have more time. Those of you praying for a miracle: today is one of the many, many answers to your prayers!

____________

January 3

Happy New Year, dear friends!

It’s been a few months since my last update, mostly because there’s not been much to share on the cancer front: chemo has been patchier the past few months due to sickness and holidays and health insurance kerfuffles. As a result, I’ve had more days of energy and fewer side effects, which has been absolutely lovely. I’ll be back on track with treatment starting with my next infusion on January 13. 🙂

I did wear a holter monitor for a couple of weeks in October, and it confirmed that my heart does not like Herceptin (aka, maintenance chemo). While my cardio-oncologist believes these heart episodes are not life-threatening at this point, he says they are a reaction to the long-term chemo and understands they’re difficult to live with. He offered to put me on a heart med so I don’t feel the heart-attack like symptoms, but the med would lower my already low blood pressure, which could present yet another problem. So at this point we haven’t jumped at the offer 😉 but we know it’s there if I tire of the episodes.

My WBC (white blood count) is also a perpetual struggle, constantly below range, which opens me up to more complex illnesses and infections. So I’m currently one of five people in Idaho who still wears a mask in crowded public settings. Haha.

Between the heart issues and the tanked WBC, we’ve decided to continue as many consecutive chemo infusions as possible, but then take breaks when necessary so I can come up for air, give my heart a rest, let my WBC rebound a bit, and live a little larger—which I’ve definitely done over the past two weeks on this chemo break! We’ve had such incredible times with family and friends and neighbors, and my heart is overflowingly FULL as this new year begins. (However, I’ve been back in my recliner the past two days because sometimes I take things a little too far. Anyone else also lack a Moderation Mode? Lol.)

Despite the continual dance through treatments and side effects, we are utterly stunned and indescribably grateful that God is using chemo (and perhaps my strict diet and naturopathic protocol as well) to hold my wildfire cancer at bay. A year ago I could not have imagined being here like this! I know many of you are praying for a miracle of full healing, but this extended time feels miraculous in and of itself. What a gift from God who faithfully holds every last one of my days (all of our days!) in his hands.

That’s it as far as the medical/health side of things goes. On the more personal side of things, I haven’t been able to describe the inner workings of my head and heart for weeks now. I’ve noticed how exhausted I am every time I try to write. I don’t know if it’s the fact that I’ve spent the past 20 months laboring long and hard to put deep places into words, and I’m simply word-tired—or if it’s because my head and heart are exhausted from the long intense journey. Whatever the reason, I’ve prayed that God would give me more words in his perfect timing because I’m still convinced that writing is a huge part of why God entrusted me with this terminal diagnosis. The desire to communicate God’s goodness in suffering still burns strong in my bones! 🙂

I know many of you are in deep waters right now, so I’ll leave you with a word that has been a strong encouragement to me in the past month, verses (from 2 Corinthians 9) that I’ve been memorizing and praying often:

Thank you again and again for the way you’ve done this for us, friends— You’ve cared tangibly and generously and faithfully for us in the midst of your own burdens and sorrows, and we are continually amazed and grateful. ?

Love you all dearly . . .

Colleen