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Cancer Updates
Cancer Updates 2023
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, What is the great symbol of the Christian faith? It’s a symbol of suffering. That is what the Christian faith is all about. It deals head-on with this question of suffering . . . Is God paying attention? If so, why doesn’t He do something? The subject can only be approached by the cross. That old, rugged cross so despised by the world. The very worst thing that ever happened in human history turns out to be the very best thing because it saved me. It saves the world. And so God’s love, which was represented, demonstrated to us in His giving His Son Jesus to die on the cross, has been brought together in harmony with suffering. You see, this is the crux of the question . . . It’s only in the cross that we can begin to harmonize this seeming contradiction between suffering and love. And we will never understand suffering unless we understand the love of God. (Suffering is Never for Nothing, pp. 13-14, 34) 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
Our cancer journey
If you know me, you’ve heard me say again and again, “Cancer doesn’t have the corner on the market of suffering.” Nor does cancer define me. (In fact, it’s one of the shorter chapters in my life’s story.) So I’m often hesitant to overemphasize or overshare details of it. There are many other kinds of suffering, some far worse than a terminal diagnosis. Plus, by nature I’m a private person (not quiet, but private!), so posting personal information online always feels like I’m high diving into a bathtub: equal parts scary and foolish. Anyone else feel me on this? 😉 But over the years I’ve learned that this online space can be a gift—a unique way to share the love of Jesus and encourage others. And because many of you are also walking through cancer (your own or your loved one’s), I think it could be helpful if I share a few more details of our journey with you. Reading others’ experiences with cancer has helped me over these years: to normalize some of the crazy, to validate some of the hard, to strengthen me for the next step. All that to say—I hope this summary of our cancer journey is helpful, not scary or overwhelming. I hope too that you can picture me sitting here at my desk with a mug of hot black decaf coffee, writing this account with miraculous peace, blown away by a God who has woven his extraordinary goodness into every dark detail and grief-filled day of the past five years. I’ll say it again: God never ever cheats his children—he always out-gives them. May you feel the truth of that even as you read this summary. ~ ~ ~ In July 2017, I felt a pea-sized lump in my right breast as I showered. After a long, complicated testing process, I was diagnosed with cancer (stage 2B, IDC, triple positive, Chek2) on November 7. A slew of appointments and scans followed, and we formed my treatment team (medical oncologist, surgical oncologist, reconstructive/plastic surgeon, integrative MD, and holistic oncologist). Three days before Christmas, I had my right sentinel lymph node removed and my port placed. (The pea-sized mass was now bigger than a golf ball.) Twelve weekly rounds of neo-adjuvant chemo (Taxol, Carboplatin, Herceptin, Perjeta) began January 12, 2018. In May, a few weeks after my twelfth and final dose, I had a double-mastectomy and reconstructive surgery. We rejoiced over the news that the cancer was gone, and I began maintenance chemo and hormone therapy. In October 2018 I had a follow-up corrective surgery, at which time my port was also removed. By February 2019 all surgeries and treatments were officially wrapped up, my hair was making a quick comeback, and I felt better overall. It was just 19 months from mass discovery to treatment’s end—and although I still struggled with chronic infections and some lingering side effects, I felt confident the cancer was gone for good. When I found a little lump on my neck in August 2020, my oncologist ordered a PET scan—which insurance refused to approve. A less comprehensive scan was approved instead, and the results came back clear. That was December 2020. One month later, I felt the faintest pain in my right arm pit as I applied deodorant—and a few weeks after that, my right ribs and hip began hurting. I initially assumed I’d injured them in a HIIT workout (hello there, middle age), but when the pain in my armpit grew into a palpable lump, I grew suspicious. We began the testing process all over again, even as our family packed to move out of state. Two days before our move, I had multiple lymph nodes biopsied—and one week later (5 days after we landed in Idaho), I received the results via a telemedicine appointment: the cancer was back. I quickly established with a reputable cancer center in Boise, navigated another insurance debacle, which pushed off all medical care for a month—but I eventually had a PET scan, and on June 2, 2021, heard the worst: stage four. Incurable. The cancer was on my spine, ribs, hips, and in my lymph nodes. Within weeks, it spread to my chest wall as well. The metastases were growing like wildfire, causing increasing pain that soon made it difficult for me to do simple tasks such as dress, walk, drive, and cook. I couldn’t imagine surviving even one year—though I was resolved to live fully every last day God would give me with my husband and son. In June 2021 I spent two weeks at an integrative clinic in St. George, where I was able to resolve some of my chronic infections, fortify my body, and find holistic support and supplements for the rigorous journey ahead. When I returned, I had a new port placed and chemo began (Taxol, Herceptin, Perjeta), as well as hormone therapy. With a few breaks along the way (since my body overreacts to chemo in a number of ways), I finished 12 rounds of Taxol in November 2021, then continued on Herceptin and Perjeta (often referred to as “maintenance chemo,” but technically immunotherapy). Because I was not able to tolerate hormone therapy—the goal of which is to starve estrogen-hungry cancer and thereby “buy me more time”—I opted for a bilateral salpingo-oophorectomy (i.e., they yanked out my ovaries and fallopian tubes, ha!) this past May, resulting in Instapot Menopause (thank you, Lis, for that term of perfection). In September, due to my body’s struggle to tolerate perpetual maintenance chemo, I took a month off (glorious, glorious month!). Currently I’m back to infusions every three weeks and I’m continuing my protocol of naturopathic treatments. (On a side note: many people message me with a variety of cancer cures, but I’m so grateful for and perfectly at peace with how God has led us to wed allopathic and naturopathic treatments for my body’s unique needs and cancer diagnosis.) God is graciously using these myriad treatments and daily protocols to
Cancer Updates 2022
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. (1) https://www.breastcancer.org/research-news/perjeta-plus-herceptin-and-chemo-shows-benefits (2) https://www.mayoclinic.org/breast-cancer/expert-answers/faq-20058066 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
Cancer Updates 2021
Dear readers, Below is a collection of emails I’ve sent to friends regarding my second, and terminal, cancer diagnosis. I’ve edited out the more personal information so that these updates can be passed along freely. My prayer is that the beauty of Jesus shines brightly into many hearts out of our family’s present darkness. He is better than life itself— Colleen May 12, 2021Hello, dear friends!Just four months ago, we had no idea we’d be moving out of state—nor that we’d be facing a second cancer diagnosis. So much has changed in such a short time, yet as John Snyder so beautifully puts it, God remains our unaltered environment.For those of you who appreciate the cliff notes version, here it is—On April 28, five days after moving into our new house, we got the results of my biopsy: cancer in the lymph nodes. We immediately looked into two reputable cancer institutes here and chose to transfer my care from City of Hope in Southern California to an esteemed medical center in the heart of our capital city—and just 25 minutes from our new home. What a gift to be so close to my care this time around!Within the next week or two we should know more conclusively what stage the cancer is (how far it’s spread in my body) and what my treatment plan looks like. At this point it seems likely we’ll begin with chemo—so I’m enjoying my hair and eyelashes and eyebrows more than you can imagine.For those of you who like the unabridged version, read on.Yes, it’s crazy to be back here. To hear the words “it’s cancer” again. To know in gritty detail what all this means. The first several days after diagnosis were dark and full of tears. I wept because my body is not a healthy and strong body, and much physical suffering is ahead. I wept even more because I could not bear the grief of what this means for my dear husband. But I wept the most—out of deep and unspeakable places of my soul—because I’m a mom of a 9-year-old boy and there are no words for what goes on in a mama’s heart when faced with her mortality.The first night of my diagnosis, my son laid in bed next to me and wept, “I don’t want you to die, Mom.” And “Why did God let you get cancer a second time?”And this might sound strange, but those are sacred parenting moments. Moments so painful yet so utterly precious, you can almost feel God’s breath on you as you gently walk your child through grief to hope, reminding him of what you so desperately need to remember yourself: this life is just a blink, whether you die at 20 or 95, and none of us is promised tomorrow. Today is a gift, and if God fills it with suffering, it’s because he loves us too much to let us waste our lives on pathetic little earth-pleasures. He wants to give us breathtaking treasure that lasts forever—and suffering is often the means by which he gives it.After those first few weeping days and nights, I’ve experienced a peace and joy and calm-down-to-my-bones that just doesn’t make sense on a human level. God is with me, he is with my husband, he is with my son and—as I told one of my doctors—that is our hope.“I sought the Lord, and he answered me and rescued me from all my fears. Those who look to him are radiant with joy; their faces will never be ashamed.” Psalm 34:4-5Thank you for standing with us and praying for us. I’ll keep you updated as we know more. We love you so so much, friends–Colleen (for Eddie too) May 29, 2021Friends, thank you so much for your outpouring of love these past few weeks! We have felt so cared for—not only by you long-time friends but also by our new friends and neighbors here in Idaho. We are so grateful. I’m behind in responding to your messages, but please know how much your words mean to this words-of-encouragement girl. I feel strengthened for the journey through you!Okay, for you cliff-notes folks:On May 14th I met with my new medical oncologist. She is incredibly knowledgeable and compassionate, and she listened with concern when I described what the last 12-week chemo cocktail did to me. Because my cancer is classified as “advanced” (as it is a recurrence), she hopes to get me approved for a stage-4 clinical trial that hopefully will behave less like a wicked stepmother and more like an annoying coworker. Ha!Like last time, insurance issues have pushed back our timeline by a couple of weeks, but my doctor is expediting everything she can on her end so that we don’t waste time in beginning treatment. While I won’t have my first test results till this Wednesday, we do already know that my treatment plan will begin with chemo, followed by surgery then radiation. (We still won’t know what stage the cancer is, how widespread it is, till the third or fourth week of June. They are scanning EVERYTHING. I mean, we will know if the cancer is in my left pinky toenail, okay?)Now for those of you who can hang with the verbose version….The first time around we were shocked to discover that cancer is a full-time job—and that the normal stresses of life don’t sit on the bench just because cancer is playing first string. To look into the future even two weeks can feel completely overwhelming. So I’m working at staying present and grateful in the moment: I remind myself to stop and feel the cool breeze on my skin, quietly soak in the sight of E and J, or enjoy the taste of my hot black (albeit, decaf) coffee. I’ll admit, some days it’s arduous work for me to look for and appreciate the good things. But regardless of how I feel at any given moment, the truth is, each day is
