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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
Mystery
June 14, 2022 Mystery— Living in theIn-betweenThe unknownThe not-yet Shadow, substanceLong and shortHandspan, breath…Infinite Holding on andLetting goOpen handedLingering Fragile, fearfulUnmoved, strongLaughing joyBitter drink Hoping long andgrieving slowSleepless nightsMercies dawn Straining forwardDoubled downKneeling, prostrateFighting on Misery andMiraclesHaunting hoursHoly days Pain and promiseLoss and loveBreathless, burdenedGreatest grace Past and futureEternal nowDeath is almostHistory In-betweenHere and ThereHe is foundIn mystery.
Merciful undoing
September 29, 2006 You use pain so wisely,With infinite care,Knowing right whereTo push and pull and tearAnd break and burnUntil I’ve finally learnedWith all my being to yearnFor You only. Merciful undoing:This pain sets me free.My blind eyes now can seeUnspeakable mystery—This death leads to life,No shortcut through strife;With my good in mindYou’ve afflicted me.
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
Dear Younger Self
Dear Younger Self—I know it’s cliché,But I would go back if I couldTo say: Make yourself small,Don’t resent being weak—Humility before GodWill set you free. Practice his presence:Listen and rest—A quieted heartHears his voice best. Don’t go it alone.Seek wisdom to knowWho to keep closeAnd who to let go. Gratitude strengthens.Counseling helps.Measure your beauty,Measure your wealth In joy,In friendshipIn laughterIn pain.In lossesIn crossesIn wakingAgain. Love as he loves you,Don’t fear what folks think.Forgive (you’re forgiven!),See what he sees. Don’t be surprised—More suffering’s to come.Grief will undo youAnd seem to have won…. But his Word will grow sweeter,His nearness will beYour joy and your good—Your everything. And when Death comes knockingYou’ll look back and seeLife had more purpose thanAll your first dreams. For each pain invitedYou into his LoveFurther and deeper And more than enough. (Written between March 2020 and Fall 2022)
Why hasn’t God healed me?
I used to think suffering was meant to teach me lessons—hard but good life lessons—and as soon as I learned what God wanted me to learn, my suffering would come to an end. I see things so differently now. Suffering isn’t a classroom—it’s an invitation into the heart of God. The greatest thing I can do with my life is love God and love people (Matthew 22:36-40), so whatever furthers that goal has to, ultimately, be insanely good for me—and for those my life touches. And in my own experience, it has been pain and grief and loss and long waits and distress and brokenness that have best helped me experience Jesus’ perfect love—and best enlarged my heart to love others in a way I never could have imagined twenty-five years ago. (We see this reality all over the Word. See Philippians 3:10 and Psalm 119:71 for starters.) I haven’t effortlessly embraced hardships in my life, and I haven’t easily accepted cancer. Not by a long shot. After both diagnoses, I wrestled long and hard with God, with lots of sobbing sessions in the dark corners of my closet, processing with family and besties and counselors, searching Scripture and asking hard questions. Lots of sleepless nights grieving harder than I thought my heart could endure. But if, for me, terminal cancer is the way into greater love for both God and people—then it is a gift, not a linear lesson to be learned as quickly as possible. My present suffering will only get harder and harder, and it won’t end until I die, but every day I’m pressed further and further into God’s heart—and that enables me to walk through “the valley of the shadow of death” with a God who also “leads me beside quiet waters” and “restores my soul” (see Psalm 23). Mysteriously enough, the process of walking with him through that valley and beside those waters is what teaches me how to better love and care for others. God may heal me yet, but only if my healing presses me further into Love. Only if healing can eternally accomplish what terminal cancer cannot. So my prayer has not been for a miracle, but for more days here to love God and love people, and I fight toward that end, especially for the sake of my husband and my son. The pressing question is no longer, “Why doesn’t God heal me?” but, “What if healing would rob me of a life of love?”
