Learning from COVID-19 & Cancer

“You don’t make the timeline. The virus makes the timeline.” — Dr. Anthony Fauci

“As physicians we’re trained to be reductionists. We rigidly follow protocol. But life is not that way. Cancer is not linear–it is completely non-linear. It lives in the science of chaos. There’s no single point of control. You need to attack it in a non-linear fashion across time and space, monitoring it and truly dancing with it.” — Dr. Azra Raza

Photo: Breast Cancer Cell, Wikimedia Commons

Chaos versus control: Oh how we humans prefer control, as long as we’re the ones wielding it. Give us a little power, the illusion of control, and we’re hooked; we won’t let go. Not without a fight anyway. Even when we can’t see with our eyes the viruses upon which we wage war. The body’s own cells even have a dog in the immortality fight, good everyday cells gone rogue (i.e. cancer) in that quest for ultimate control and mastery over all that cannot be explained or understood.

Both cancer (the body turning on itself) and COVID-19 (a viral attacker we cannot see and about which we know so little) have much to teach us about the illusion of control and the gift of embracing chaos. Living with metastatic breast cancer teaches one the hard truth that control is, indeed, pure illusion. I follow the palliative chemo regimen my oncologist sets forth. I accompany that with my own herbal supplements, shakes, and a vegan diet. I’ve been without caffeine, alcohol, and have had virtually no sugar in a year and a half. I exercise, practice yoga, garden organically, and prepare whole foods meals. All of this is wonderful, and I am fortunate to have the resources and access to what it takes to maintain a healthy, vegan lifestyle. Still…all of this does not equal control over the cancer situation. It’s still there, tentatively peeking out with every crack of bone or ache of joint. Cancer and I are still learning from each other and figuring out whether we can coexist, or which one of us will give in to the other. Control, you see, is highly overrated.

Photo: Social Distancing for Common Good, Daniel Lobo, Creative Commons

Take the control issues plaguing our country in the wake of the COVID-19 pandemic. Wow! Talk about living in the midst of hot mess chaos. There’s been a whole lot of blame slinging, twitter storming, supply/distribution hiccups, chain of command confusion, and conflicting information. Makes one kind of simultaneously consider throwing in the towel and curling up in a fetal position or digging in to your particular version of “right” and spend precious time pointing, posting, and screaming at others in your righteous hissy fit of indignation. Control comes with a high price tag and suspect warranty. Buyers beware: Maintaining an illusion of control may cost you your life or other minor inconveniences.

Most of us now have firsthand experience with loss of the illusion of control. Many people were only one paycheck away from financial destruction; they now sit in the rubble of despair. Others had to continue to work in front line health care, essential services, or public safety jobs. Still others suddenly found themselves without work, installed as teaching assistants for homebound students, and wondering where next week’s groceries are going to come from. There is no time or energy to put up an illusion of control when the new normal is anything but normal. Let’s all step back and take a deep breath. Forget the FOMO. Stop and smell the world burst forth in a riot of greens, reds, yellows, purples, and fuschia. Yes, smell the colors. Think outside the dualistic and limiting boxes of the past. Live the now and savor it. Live it and love lavishly every atom and molecule, every person you meet. Live and love the very source of love, the Creator of all things. Let go and live.

My body’s own rogue cells, the ones feasting on my skeleton and chipping away at the foundation, taught me a hard lesson: I have no choice now in letting go. I can do everything right–and I should respect my body and life enough to try–yet the cancer may very well outpace any human efforts. I can truly let go, give up all that does not truly matter, and experience the same level of disease progression. Or, I could be one of the ones for whom spontaneous regression and/or radical remission are more than hopeful words. Perhaps none of us really has as much choice as we think we do. Anything can happen. All we are promised is the now. Wouldn’t it be a pity to waste the one thing we really do have while scheming for an uncertain or unmanageable future?

There is so much we do not know about cancer and COVID-19. Yet we can’t let that prevent us from embracing the chaotic mess of life right now. If we let go and let love be our guide, chances are we won’t mess up too badly. Imagine yourself beyond the break, catching and swimming with the waves, letting go and riding them to shore. Learning to let go may be the toughest thing you ever have to do, but I’m here to tell you that initial reports are it’s worth it. Let’s keep one another posted! Here’s to letting go.

Sources

The quote by Dr. Anthony Fauci is taken from this Forbes online article.

The quote by Dr. Azra Raza is taken from her book The First Cell: And the Human Costs of Pursuing Cancer To the Last. New York: Basic Books, 2019, p. 175.

COVID-19, Cancer, & Change

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Novel Coronavirus SARS-CoV-2, NIH Gallery, Creative Commons

Here in central Pennsylvania most businesses have or are preparing to lock their doors. Essential services like grocery stores, pharmacies, and gas stations are still open and  populated by gaping holes and apology notes on shelves that once stocked toilet paper, cleaning supplies, bread, milk, eggs, and the ever-popular hand sanitizer. For many people life has taken on the surreal appearance of something between a snow day and a scene from a bad movie. It’s no wonder. We humans don’t do change well.

As I pondered the disruptions and strangeness of this unseen menace, it struck me that the physical distancing and suggestions pertaining to COVID-19 avoidance aren’t all that different from life with ongoing cancer treatment. For those who regularly adjust their lives to the whims of a compromised immune system this IS pretty much life as usual. Sure, for those of us who live and thrive with metastatic cancer and other immuno-suppressing conditions, we’re usually the ones making the determinations about what’s safe for us, which crowds are worth the risk, what the potential health-trade-offs might be, and making sure that hand sanitizer is always nearby. In short, you get used to it. It becomes a new normal. You learn lessons from this life and from your own rogue cells. You adapt–if you want to live.

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Metastatic breast cancer in pleural fluid, Ed Uthman, Creative Commons

Hopefully, for most of us this time of social distancing (I prefer the term physical distancing. It feels more accurate.) will come to an end in a couple weeks or maybe more. For many of us this feels like more of a major inconvenience than a life-altering threat. We’ve had no choice in changing our patterns. Yet, we still have so much choice and abundance around us. I hope that we all avoid the temptation to hoard, that we take this opportunity to care for our neighbor in both small and great ways–like not buying out an entire shipment of Lysol spray to hoard just because you have the resources to do it. How much Lysol can one family go through in a month? It’s simple. Use what you need. Share what you have. Consider others. Treat others as you wish to be treated. Love lavishly. Be creative. Use this time to examine and perhaps reorder your life, your goals, your hopes, your plans.

Pay attention to others. Pay attention to everything around you. Listen to the silence. Look at the stars. Marvel at your breathing. Did you know that you breathe more than 23,000 times per day? That adds up to about 8,409,600 breathes each year. Talk to those with whom you are sheltering during this time of COVID-19  distancing. Learn about your family and friends. Play an instrument. Cook. Sing. Take a walk. Garden. You have so many possibilities.

Importantly, care for others. A lot of people will be hurting because of this time of distancing. There will be great economic disruption. Please continue to support the non-profits you value. If you are part of a faith community, please give generously either online or by mailing a check. Support local businesses that have online ordering right now. Make extra donations to your local food pantry if you’re able. Check on elderly neighbors and single parents who may have no way to pick up items they need. Above all, love lavishly.

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Live and love lavishly! Image: Kate Fisher, Creative Commons

May you celebrate many ordinary and extraordinary moments today, living in the here and now like it’s all you really have. Wisdom, cancer, and other teachers know that it truly is really all that any of us have. This one precious moment. Live it for all it’s worth!

Of course, I’m still holding out for that day when we find NED (no evidence of disease). I know it’s possible. I know people who have experienced this radical healing.

UPDATE:  I haven’t written much lately because I’ve been too busy living. I highly recommend it!  My December CT scan showed no progression of disease. This is really good news! I remain on the oral chemo regimen of Ibrance and Letrazole. I augment these meds with a lot of supplements, Frankincense and Myrrh, vegan diet with no processed sugar, alcohol, and very little processed foods period, along with other complimentary treatments like yoga and far infrared-ray saunas. I still live with a lot of aches, back pain, and fatigue, but every day is gift! Thanks for following along. It means a lot to have your prayers and intentions.

 

Chemo Friday Reflection

 

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Ports make life so much easier!

Receiving a diagnosis of a terminal illness (cloaked in the more palatable guise of something that’s going to be treated as a long-term chronic condition but that is 98% guaranteed to kill you at some point) can be a real buzz kill. I can’t say how it goes for other folks, but here’s how it went down for me.

First there’s numbness. It was difficult to wrap my head around the facts. I knew deep down inside the cancer was back; I could feel it quite literally in my metastases-hollowing bones, ascites-distended belly, and painfully swollen ankles. Part of me wanted to burst into tears and echo Scarlett O’Hara’s quotable line from Gone with the Wind: “I’ll think about it tomorrow.” Still another part of me wanted to stick my fingers in my ears and holler “La La La La La La La!” while floating in a dreamy hot pink kayak down that river called denial.

By contrast, the fierce, optimistic part of me kept saying “Suck it up, buttercup! Live your one-precious-poetry-of-Mary-Oliver-infused life like there’s no tomorrow! You’ve got this thing.” And when I ceased talking and thinking long enough, the still, small voice of God whispers from deep in my gut: “Just be. Stop. Stop doing. Cease fretting. Listen. I am with you.”

All the voices. All the feels and emotions. Just b-r-e-a-t-h-e. Just l-i-v-e.

It’s been four weeks since my official diagnosis, just shy of one calendar month. As of today I’ll have had three Taxol treatments, downed 23 quarts of super greens and antioxidant smoothies (love my collards, kale, and spinach!), ingested two bottles of enhanced Transfer Factor, four cups of special herb tea each day, multiple rounds of barley grass tablets, and a nightly bubbly akalyzer beverage. Add to that a delicious mostly raw, whole foods vegan diet (not very practical for church potlucks), and for the most part I feel and look better physically than I have in ages. My morning weight has dropped into the mid-120s, and were it not for the fatigue, I think I could go out and run a 10K with no trouble at all. Even the effects of the chemo have been minimal and manageable.

My biggest challenge in response to the diagnosis? Slowing down. I can no longer keep up the 12- to 14-hour work days I had been used to “managing.” And you know what? That’s a good thing. A healthy thing. A stewardship of life and Sabbath thing. Thank you, cancer, for teaching this hard-headed, over-achieving, duty-bound woman about priorities. We miss so much of life in our furious multi-tasking, our need to accomplish, to please, to do good, to achieve, to matter, etc. etc. etc. One might assume I would have learned a thing or two in my first go-round with breast cancer 14 years ago. Clearly, there’s still some learnin’ to be done: “Fall down seven, get up eight.”

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#Thrive pose for Metastatic Breast Cancer Awareness Day (10/13) 

My strongest medicine? It’s not the Taxol or the vegan diet and supergreens. It’s G-R-A-T-I-T-U-D-E. I am so grateful for the number of people who are walking life’s journey with me. My beloved husband, our children and extended family, friends and colleagues all have rallied to form a hammock of support and care. It’s a beautiful and amazing thing to behold.

Your friendship and solidarity–evidenced through cards, letters, flowers, books, chemo kits, encouraging words, time and presence, and above all your prayers–mean so much. Thank you. You lift my spirits. You help keep me grounded and focused. You point to all that truly matters. Thank you. Gratitude is indeed strong medicine, and your accompaniment and prayers have served me up a big dose of it in beloved community near and far. Thank you.

Now back to working on slowing down. To be continued…

When the other shoe drops…

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You’ve probably heard the expression “waiting for the other shoe to drop.” Its origin is in the tight tenement quarters of nineteenth century New York City, when tenants could hear the shoes of their upstairs neighbors hitting the floor above them, and it’s come to express that feeling of waiting for the inevitable to happen. For some cancer survivors “waiting for the other shoe to drop” is that ball of emotional junk you stuff deep down inside of yourself because you know those rogue cells could cut loose again at any moment.

For me, that other big pink brassy platform heel of cancer dropped officially on Friday, September 28, when my beloved and I sat in the office of my new oncologist to receive the official results of a bone biopsy. Yes, I am now living with Stage IV Metastatic Breast Cancer. In one afternoon, the trajectory of our lives took a BIG detour.

Don’t get me wrong–it’s not all doom and gloom. I kind of suspected this was happening from my symptoms and all of the subsequent tests–ultrasounds, CT scan, paracentesis, thoracentesis, biopsy, bloodwork. It felt as if my old teacher cancer was back for another round of real-life education. My oncologist is optimistic that my cancer can be treated as a chronic medical condition like diabetes or heart disease. She talks in terms of years rather than going home and getting my affairs in order. Evidently I have options, a rather strange thing to ponder when your body has just gone into full scale rebellion against you.

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The treatment wheels are already in motion. I had my first round of chemo last Friday (Taxol), and I’ll have a port placed this week to make all the required infusions, blood draws, etc. easier. I’ve started a whole foods diet complete with a quart a day of super greens smoothies, some special herb tea, supplements designed to boost my immune system, and I’m continuing my yoga and meditation. We’re also exploring alternative therapies such as using a far infrared spa, reiki, and Ayurvedic treatments.

I’m going in with my eyes wide open: my life (our family’s life) is forever changed. Nothing can be taken for granted now. Every single day is precious. There is no cure for my cancer–at least not now. Strangely, I am at peace with this about 95% of the time. The other five percent I alternate among feelings of anger, profound sadness, terror, and fear. Yet, I trust that God’s got this and is right here with me. I truly believe that whatever happens tomorrow or next year or whenever, it will be okay.

I have the most amazing husband on the face of the planet. We have a strong family network that has already sprung into action to love, support, and pray for us. We have awesome adult children, and wonderful colleagues and friends. And, I am blessed to serve a congregation that is truly a light in our community, a loving and vulnerable expression of Christ’s Body, and a group of folks who love one another (and yours truly) for exactly who God made us all to be. Friends, it just doesn’t get much better than that.

Sure, the return of cancer sucks. There’s really no better way to say it. But it will not define me, confine me, or rob me of my joy. There’s entirely too much life to live, too much of God’s good creation to stand in awe of, and too many wonderful people with whom to be in relationship.

What do you do when cancer drops the other shoe on you? You pick it up, put it on, dye your hair bright pink, and start dancing! I hope you’ll join me for the journey.

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(Note: The shoes are for illustrative purposes only. There is NO way I could even walk in these beasts! They were borrowed from my daughter, Maggie, who also gave me my new pink hairdo.)