As I did in 2021, I’m posting some of the email updates I send to friends and family. I typically edit these down a bit for public consumption—but I share them here with the hope that they will encourage you as you walk through your own sufferings.
March 8, 2022
Hello, dear friends!
Thank you, thank you for your continued messages of love and encouragement. I’m mortified at how behind I am in replying to you all, but please know how much your words care for me (for us) and what a lifeline they are. I know your lives are crazy-busy, so it makes your gift of time and encouragement all the more precious to me.
I’ve appreciated some of your questions in recent months, and I thought it might be helpful to make this update into a Q-&-A of sorts. 🙂 I’ve concluded that cancer and its treatments are just plain ol’ confusing and difficult to make sense of (much less explain), and I’ve done a marvelous job of throwing out just enough details and terminology to cause mass confusion. Ha! So I’ll try to sort some of it out for you here, and you can just read the ones that interest you and skip over the others:
Wait, what? You’re still doing chemo?
Yes, it’s totally confusing! In July ’21, I started on a trifecta of chemotherapy: Taxol, Herceptin, and Perjeta. Taxol is the drug that kills rapidly dividing cells, which is why it’s so effective at killing cancer cells (as well as hair, brows, lashes, etc.). But because it is so harmful to the body, standard-of-care limits Taxol to twelve doses. I had my twelfth dose at the end of November, so now I’m on Herceptin and Perjeta only, and those are administered every three weeks instead of every week.
Herceptin and Perjeta aren’t technically chemotherapy by definition, but they are administered and referred to as if they were. They are “targeted therapy medicines that treat HER2-positive breast cancer by blocking the cancer cells’ ability to receive growth signals.”(1) HER2 is “a protein called human epidermal growth factor receptor 2″(2), and if I understand correctly, about 1 in 5 breast cancer patients are positive for this receptor like I am.
Herceptin and Perjeta still make me sick and tired but much less so than Taxol. I have daily waves of energy that I ride (and enjoy!) in between trips to the bathroom and the recliner. Haha.
Taxol will be back on the table once hormone therapy cannot hold the aggressive cancer at bay. But for now, I’m so grateful for a break! And for The Return of Some Hair. 🙂
Why can’t chemo and surgery get all the cancer like it did last time?
It’s a great question. Because chemo kills only rapidly dividing cells, it can effectively kill (or, at the least, significantly shrink) localized cancer tumors. Think of it as cleaning crud out of a toilet. The crud is contained in the bowl, and a good cleaning solution and some elbow grease will do the job.
But cancer that is widespread (referred to as “distant”) in the body means that not only are the cancer cells in widespread circulation, but the cancer stem cells are as well—and those stem cells are NOT rapidly dividing, therefore they cannot be killed by chemo nor removed by surgery. They will continue to grow cancer wherever they circulate. As opposed to that mess contained in a toilet bowl, this is akin to cleaning up a major sewage spill in the ocean.
In 2017, my cancer was found only in my right breast, and while it was incredibly aggressive and fast-growing, it was contained—it had not yet spread to my lymph nodes and beyond. So the chemo effectively shrunk the tumor to a size that could safely be removed surgically.
As of Spring 2021, the cancer stem cells are present all over my body and can’t be eradicated by chemo or surgery. So chemo can temporarily hold back the onslaught, but eventually the cancer finds new pathways around the drugs.
Why not stop the toxic treatments and get to the root of your cancer with natural methods and treatments?
Again, a great question—and one we’ve asked ourselves. This was a hard series of conversations and decisions at the outset of both diagnoses—but especially with this terminal diagnosis. I’m super-duper sensitive to most medicines, so I’ve always tended toward natural cures and treatments. And I long ago pooh-poohed sugar and processed foods, chemical cleaners in our home, aluminum deodorants, etc. In other words, I’m a fan of all things natural. 🙂
But every cancer diagnosis is complex and unique, and what works for one person may not work for another. With my particular diagnosis and the aggressive nature of my cancer, I don’t have the luxury of time to experiment with a zero-medicine or extreme-natural-treatment approach. Which is why we’ve decided to wed the two worlds–making the most of both allopathic and naturopathic treatments.
What’s the purpose of your hormone therapy?
My hormone therapy is two-pronged: there’s an every-third-month Zoladex injection (it shoots what looks like a big grain of white rice into my belly), which shuts down my ovaries (and therefore the estrogen that feeds my cancer), and there’s a daily oral pill that kills the circulating estrogen in my body (that originates in the gut, etc.).
Starving the cancer of estrogen is another way of slowing its growth, so while I absolutely loathe the side-effects of hormone therapy, I’m grateful for it. 🙂
How often are you getting scans done?
I love my oncologist’s approach to scans at this stage of things: we let my symptoms or the appearance of new masses dictate my scan schedule. So if my appetite decreases, or I experience new pain, or I find a new mass, etc., we run the appropriate scan. Last week I was in for another ultrasound—and a follow-up ultrasound plus a biopsy may be next. But I’m grateful we’re not just running superfluous scans every few months because (1) they are crazy expensive and (2) I am so so weary of nonstop appointments/tests/procedures and am oh-so-happy to skip the unnecessary ones. 🙂
What timeline did the doctors give you?
Here’s the thing: We’ve hesitated to share any specific timeline because it isn’t necessarily something we are banking on, nor does it feel helpful for anyone else to bank on. (What if God takes me before then? Or gives me more time?) The first timeline I was given last June quickly felt outpaced by how swiftly the cancer was overtaking my body. I was pleading with God to give me another year—to let me make it to Jeremy’s 11th birthday (this July). Since then, I’ve swung back and forth between “I don’t think I have much longer” and “I just might have longer than I thought”—depending upon test results, how my body feels, the discovery of a new mass, etc. It’s a bizarre and bitter and beautiful experience to be so constantly aware of my end, to have disappointing test results follow on the heels of good ones, to fight so hard for some more time here even as I feel weary-to-the-bone of fighting. To the marrow of my soul I feel the apostle Paul’s struggle in his letter to the Philippians:
“Now if I live on in the flesh, this means fruitful work for me; and I don’t know which one I should choose. I am torn between the two. I long to depart and be with Christ—which is far better—but to remain in the flesh is more necessary for your sake.” (1:22-24)
Of course, once I begin to decline, we will have a much clearer idea of my timeline and will share specifics with you then. That feels heavy to write, so I pray there will be much grace and peace as you read this.
~ ~ ~
This is a sacred suffering…
I’m sitting in chemo chair #13 as I write this paragraph, listening to the man next to me talk in painfully slurred speech about his most recent surgeries and how his cancer has come back. Two chairs down is a woman who is here for the first time. (There is nothing quite like your first chemo infusion.) Here at St. Luke’s, you can have a friend or family member come in and sit with you during your first infusion (but Covid rules prohibit any visitors after that), yet this woman’s friend didn’t want to stay—she left to take her car in for a tune-up. I listened as the nurse explained all the possible side effects of the drugs being infused into this new cancer patient’s body—as she sat there all alone.
I could tell you story after story like this. You could cut through the suffering here with a knife. And I’m reminded that this is why God entrusts suffering to his children—because it is the way to enter in with and love a world that is suffering. Why would I ask to be delivered from this awful diagnosis if it means bringing Jesus’ hope and light and love to the darkest corners of this chemo ward and beyond? Why leave the suffering to those who are alone and without the love of Jesus? We who know and love Jesus are here for just this purpose—to lay down our lives to love others for him.
But we’re so enamored with ease and comfort and health and beauty and longevity and financial security and influence and success. (I’m as guilty of this as the next person.) But the way of Jesus is the way of the cross—and the way of the cross is the way of the empty tomb, and the empty tomb means death defeated and resurrection power! To avoid suffering is to miss out on Christ’s life powerfully at work in us. It’s to miss out on caring deeply for others, in ways that will be felt into eternity.
You, dear friends, have your own sacred sufferings, and I want to encourage you as I’m encouraging myself today: let’s wrap our arms around the cross we bear, the cross we bear with him, the cross that leads to everlasting joy—not just for us but also for all those our lives touch. Not one moment of our suffering is wasted. It is working MIRACLES behind the scenes. It is “preparing for us an eternal weight of glory.” There is so much purpose and hope to be had today.
So grateful to be on this journey with you. You all are precious beyond words to us—
“The weightiest end of the cross of Christ that is laid upon you, lieth upon your strong Savior. For Isaiah says that in all your afflictions he is afflicted [63:9]. … Glad may your soul be, even to walk in the fiery furnace, with one like the Son of man, who is also the Son of God. Courage up your heart; when you tire, he will bear both you and your burden [Psalm 55:22].”
—Samuel Rutherford, Letters (1628)
~ ~ ~
April 29, 2022
Hello, sweet friends!
It’s been a couple of months since I last emailed, so I hope to write a more informative and heartfelt update soon. But for now, we’d love your prayers as I go in for surgery this coming Wednesday, May 4th, at 7:00 a.m. (I just heard several of you think, May the Fourth be with you. I receive that blessing.) The side effects of hormone therapy have become unsustainable (nice-speak for some choice words and grueling details I’ve decided not to share here *snort*), so I’ve opted for the alternative of removing my ovaries and tubes. Because I’ve already undergone multiple surgeries, my doctor didn’t want to rush into yet another one—but we finally concluded it’s the far lesser evil.
This is an outpatient surgery, and even though I’ll be undergoing general anesthesia, I should be home within five hours if all goes well. Honestly, it feels like I’ve scheduled nothing more than a trip to Costco on a holiday weekend (annoying but not newsworthy), but I realize that you all appreciate staying informed about these kinds of things—and it would be good to have people praying that my body will be strong and recover well, and that this procedure will be effective in “buying me some more time” as it will cut off much of the estrogen supply that feeds my cancer.
It’s been awhile since I’ve donated a body part (so far a pair of tonsils, two breasts, and a sentinel lymph node), so it feels timely and right to give again. Hm. I probably shouldn’t be writing this email right now, as I’m feeling entirely too punchy and my sense of humor is mildly morbid. But I do wish you all could be here with me today, sharing a Topo Chico and some spring sunshine—and laughing together at some of the craziness that is Stage 4 Cancer.
A lot has happened these past two months, so I’ll update you on more of these things soon. Until then, thank you so much for praying for me/us this coming Wednesday. I’ll shoot you a quick email once I’m out of surgery and home recovering.
As always, I love hearing from you and knowing how I can be praying for you too!
Love you all so so much,
~ ~ ~
June 27, 2022
Friends, I can’t believe I’m sitting here writing to you. Last year at this time, my body was growing cancer faster than we could get tests done and treatment started—so it is nothing short of a marvel that I’m still walking around (last summer I got to the point where every step was labored and painful); I’m still eating and drinking and breathing and laughing and writing. God is giving me more time to LIVE and every day feels like an extraordinary gift.
Do you remember me saying how I wanted to LIVE FULLY every day God would give me? Well, this past year has been burstingly full of that life. In the midst of breathtaking grief and insanely dark days, I feel like I’ve been more myself than ever before. Yes, I’ve been messy and frail and sometimes downright difficult to be around, but despite it all, I’ve been living out of the heart Jesus gave me. When someone recently asked me to describe this past year, I said, “There have been no throwaways.” Every moment has been weighty and sacred and significant. Everything has mattered immensely. (Even the worst moments.)
In reflecting on the past year, I’m also stunned at how God has paved the way for me to do just what his Spirit pressed into my heart minutes after I heard my terminal diagnosis: “I want you to write. That’s one of the reasons I’ve entrusted you with this diagnosis.” And so I’ve written and written and written—books and letters and Bible studies and poems and emails and prayers. I’ve written on my laptop, in my phone Notes app (usually at 3:00 in the morning), on scraps of paper, in the pages of journals. And as the year has unfolded, and God has faithfully revealed more of “the good works he’s prepared for me ahead of time,” I’ve leaned into those with such an experience of his presence carrying me along. It’s been an indescribably full and fulfilling year.
The flipside of this gift of more life, more time, more beautiful work to do—is that there’s not a day that goes by (sometimes there’s not even an hour that goes by) when I don’t feel the painful reality of my diagnosis and the rub of living amid “normalcy.” (I know “normal” has been drastically redefined for all of us in recent years, but I mean the normalcy of even just getting out of the house or having energy to accomplish basic household tasks. I find myself watching people in awe as they hurry here and there and everywhere. Keeping a bare-minimum schedule is exhausting to me right now.) A couple of my besties recently told me that I talk about going to my chemo infusion as if I’m going to a hair salon. Haha. Yep, that’s the new normal. Chemo till the end. Doctor appointments stacked upon blood tests stacked upon medical bills. Normal is struggling to get myself out of bed before 9:00 am each morning because my body is not happy—and then crawling back into bed by 9:00 at night. Normal is quietly slipping into the bathroom when we have company—to let my body get sick, then walking right back out to rejoin everyone as if nothing happened. Normal is a whack-a-mole of symptoms and side effects. (My left arm is lathered with hydrocortisone cream as I write this due to an ongoing itch-and-burn.) Normal is… weird.
And so I live in this sort of “middle space,” and it’s beautiful and strange and hard and deeply meaningful all at the same time. It’s the agony and the ecstasy. And I know many of you resonate with this in your own unique ways. (This is me being a broken record: A terminal diagnosis doesn’t have the corner on the market of suffering. One of my best friends just had her right leg amputated, and I haven’t found any words for the pain I feel for her. I can’t even imagine that kind of suffering. Another dear friend is walking with her teenager through dark days of mental illness, and it’s brought me to tears more than once. I could go on and on. Fill-in-the-blank with your suffering, and you too understand what it’s like to live in this middle space.)
But there’s a truth that’s played on repeat in my head and heart lately. I’ve been studying the book of Jude, and at the end of his brief letter, after he’s elaborated on how irrational and irreverent and hateful some people are, Jude tells his dear friends to “keep yourselves in the love of God.” It’s become my constant prayer: “God, help me keep myself in your love.” In a day so rife with hate and rage and division, and in the midst of suffering, those of us who keep ourselves in God’s love can be the most winsome, courageous, gentle, merciful, truthful, peaceful people on the planet because God’s love grows our hearts big and gives us hope to hold out to those who desperately need his love as much as we once did (…as much as we still do).
There’s so much more I could say, so many things I haven’t updated you on, but since I’ve struggled with how to find words for it all these past several months—I’ll consider it a win that I’m finally sending you more than a poem or surgery notification (ha!), even if this is not as clear or concise as I would like it to be. 😉 And in the spirit of Jude I’ll close with this: I pray today that you, dear friends, will keep yourselves in the love of God (—and pray for me too, that I’ll do the same).
Oh how I love you all!
~ ~ ~
September 7, 2022
I had every intention of writing a super brief update, but lo and behold–the novella. (Again.) I’d suggest skimming, speed-reading, or perhaps popping a big bowl of popcorn to get yourself through to the end. Ha! Okay, here goes:
Despite my verbosity, these updates have actually gotten harder and harder to write. I don’t know how to adequately describe these days. I long to be honest but hopeful, real but not depressing. How do I make sense of both the agony and the ecstasy? How do I do justice to the massive joys while describing the crushing sorrows?
~ ~ ~
On the medical side of things— I’m taking a month off of chemo due to some increasingly difficult side effects and exhaustion. Long-term chemo is rugged! It deteriorates bones and organs, especially the heart—so in addition to my every-three-month EKG, my doctor has referred me to a cardio-oncologist for a more thorough look at why my heart is acting out. (We’re still waiting for insurance to approve the referral.) We’re hoping this break from chemo gives my body some much-needed rest and strengthens my bones and bowels and heart (etc.!), so I can continue with treatment at the end of September.
I’ll admit, I’m experiencing a weariness I can’t quite put into words. The indescribably beautiful gift of more time comes at a high price that my body is tired of paying. Our cancer journey began five years ago, so I’m no stranger to pushing through myriad pains and rigorous side effects, but the past 16 months have required more of me than I ever thought physically (and emotionally and mentally) possible, and my body – is – exhausted.
Strangely enough, I look fine, even healthy—no one would guess I have stage-four cancer—but I feel almost fragile physically and definitely less resilient, like a rubber-band that’s lost it’s stretch and bounce. Even my favorite tasks, outings, and get-togethers feel akin to summiting Mt. Everest.
But—remember how I wrote to you about Mystery? It’s even truer now, several months later: the greater my weariness and weakness, the greater my experience of eternal realities, of Jesus’ presence, of living out of the heart God has given me. I still laugh loud and love hard. I crunch writing deadlines. I still dream (“A third book before I’m gone, Lord?”), and even when I feel like there’s not much “fight” left in my body, I fight harder than ever—not only for more days with Eddie and Jeremy, with my family and besties, but also for more days to share Jesus’ love and hope with a broken, hurting world.
And so I walk in glorious, agonizing, indescribable mystery and feel the sacred trust of more breath, more life, more time. I can almost feel God holding me together and giving me another day to love him and to love people. He still wants me here (at least for this moment)—even as he’s wooing me Home.
Yes, terminal cancer can be, in the words of Rory Gilmore, “like a pop-up book from hell” (writing that just made me laugh so hard). But God loves taking our hellish circumstances and turning them into OVERFLOWING LIFE,* outgiving us even as he asks much of us.
I know that the grace I’m experiencing (and that Eddie and Jeremy are experiencing) is due to God answering your faithful prayers for us. Friends, your prayers are the greatest gift in the world!! Thank you with all my heart. Two specific ways you can pray for us right now are: (1) that I’ll be able to sleep more than a few hours each night, and (2) that God would continue to increase our family’s capacity to suffer with joy and hope and purpose and peace.
I’ll say it again and again: terminal cancer doesn’t have the corner on the market of suffering. So many of you are facing your own deep griefs and pains and losses, and I’m so grateful you share them with me and show me Jesus in them. I love praying for you, and I love YOU more than you know.
One more thing I think you should know: I basically live in yoga pants and hoodies because I’m too tired to keep up with clothes trends, and comfortable clothes are everything right now—but I ordered a pair of flare jeans that arrived this week, and I told Eddie I got them because I still want to be sassy.
From your exhausted, grateful, weary, sassy friend—
P.S. (Because what’s an update from me without a P.S.?) – My longtime friend and website wizard, Sarah Robinson, spent tireless hours redesigning my cranky old website, and has created a beautiful, organized space for me to share my podcasts, articles, videos, and books. What. A. Gift. You can see her lovely work at colleenchao.com.
P.P.S. – Thank you, thank you to those of you who continue to reach out to and check in on Eddie, and who love Jeremy so well. My heart is strengthened when I see my boys cared for!!