Yellow is NOT my best color…

Yellow was never my color–not even back in 1973. Here I am on the steps of the Parthenon in Nashville with my parents.

Let me just reiterate that statement…I do NOT look good in yellow. Right now I’m being compelled to “wear it” thanks to an explosion in my bilirubin counts that has left me jaundiced. It’s not a hot fashion look I assure you.

But things were going so well, weren’t they? Yes! Just a few short months ago a PET scan revealed encouraging changes and reduction in activity in my bone and liver mets. My tumor markers were going down, down, down, and all was looking super encouraging thanks to Abraxane.

One thing about metastatic breast cancer is that you never can count on one day being the same, or better, or even worse than the previous one. Cancer cells are smart, and they can learn to outwit the drugs that we throw at them. In fact, I remember telling my oncologist that Abraxane was either going to make a big difference, or it was going to make the cancer really mad. The latter is clearly the response.

About three weeks ago I started having trouble breathing again. Going up stairs required a major effort, and I was increasingly fatigued. The end result was a trip to the emergency room that resulted in a hospital stay, a pleural tap that removed 1.6 liters of fluid from my pleura complete with cancerous cells floating around in it. I did not improve significantly after a few days of rest at home, so I knew something was up (and it was probably going to be the tumor markers).

Sure enough, things took a 180 degree turn with my liver numbers and tumor markers. Why? Who knows? There’s so much we still don’t know about cancer. So what does this mean for me?

Image: Gemzar’s chemical makeup. Wikipedia

My oncologist at M.D. Anderson-Cooper is starting me on a new chemotherapy drug tomorrow in hopes that it will get those numbers headed in a better direction. So it’s bye-bye Abraxane, and hello Gemzar, aka Gemcitabine Hcl. It works somewhat differently from Abraxane and is classed as an antineoplastic, antimetabolite.

As I understand it (sure wish I’d been more attentive in chemistry), this drug is similar enough to a natural chemical to participate in a normal biochemical reaction in cells but different enough to interfere with the normal division and functions of cells. Evidently it’s pretty good at inserting itself into the work of quickly dividing cells, such as cancer cells, inhibiting their greedy metabolic process. I hope this little chemical trickster will do the trick for me.

It’s an old drug, patented in 1983 and approved by the FDA for medical use in 1995, that’s used in the treatment of many cancers, including metastatic breast cancer. Gemzar is also used off-label to treat certain cancers in the liver, so I’m hopeful that it will act accordingly for me. It does come with a slew of side effects, some of them quite serious, so I’ll have to watch and be watched closely. That said, I have come to appreciate the rather glib saying “Better living through chemistry,” so I’m willing to give it a 110% shot.

Additionally, next Wednesday I’ll have a PleurX catheter inserted to help drain the nasty fluid that’s preventing me from breathing well. It’s an outpatient surgery done under general anesthesia similar to that used for everyone’s favorite but completely necessary colonoscopy. I’m a little nervous about that, but it’s the best way to treat this problem. If I’m lucky it may even irritate my pleura enough to fuse it to my lung if my lung will completely reinflate with the negative pressure of the regular drainings.

Image: Pinterest, Creative Commons License

I remain optimistic about this cha-cha dance of life. Even when I take two steps back, there’s always the potential to step forward. And, hey, every day is gift. We all need to make the most of the days allotted us.

Please send all the prayers and positive energy you can spare my way. I truly believe that prayer is powerful medicine–better than any chemo without the nasty side effects. Life is beautiful, friends. Don’t take it for granted! Thank you so much for walking this journey with me. I hope and pray that we have many more miles to go.

Three cheers for community!

“Alone, we can do so little; together, we can do so much” – Helen Keller

There is great power in community; my own life experience bears witness to this truth. In fact, to thrive as humans we need to be part of a community, or better yet, part of many circles of connection. We can definitely do more together than we can alone, everything from sharing collective wisdom to sharing resources (such as tools and equipment), to gathering for meals, to supporting others in time of trial and pain, and celebrating with folks when good things happen. We are not built to function in isolation, even the most painfully introverted among us need connection to thrive.

Yesterday, I received a HUGE surprise in the mail from some friends I made about a dozen years ago when I signed up for a Yahoo! Group called The Compact (more about the surprise in a minute). You can read about The Compact here and here, but in a nutshell it is a diverse group of folks who covenant together to avoid excess consumption and make do with used, bartered, shared, and thrifted purchases, or do without. There are exceptions in the group’s guidelines for what may/should be purchased new: supporting local craftspeople and artists is good stewardship while used undies are not so much of a thing. Sharing and redistributing goods is encouraged (think freecycle.org, trashnothing.com, and various freebie groups on Facebook, for example), as is shopping at thrift stores, resale stores, etc.

I joined The Compact while serving my first parish in North Dakota. A funny thing happened while I was learning some amazing frugal tips and meeting folks who live all over the United States; I started forming relationships. Some I’ve lost touch with (still wonder what happened to L in Alabama), one died (rest easy, G), while others I still communicate with via Facebook. I get to see wonderful photos of E’s beloved pups, hear about K’s amazing grassroots hunger non-profit, see photos of J’s new victorian house and hear about her writing, appreciate P’s activism and advocacy, marvel at another K’s fabulous thrifting scores, and admire beautiful needlework projects by L and L and S. Through it all, I’ve been able to “virtually” celebrate graduations, anniversaries, weddings, military enlistments, new homes, sobriety anniversaries, jobs, grandchildren, and beloved pets, as well as grieve painful losses, pray for healing, and laugh at memes and jokes.

Yes, there are compelling arguments that social media relationships aren’t “real” relationships for a whole host of reasons, but when it comes to my Compact connections, I would argue otherwise. Some of us have never met in person (others have been luckier due to geographic proximity), but we share a common interest and nurture friendship from that foundation. Now, back to that surprise…

Several of my Compact friends have been following my cancer journey with encouragement, prayers, good intentions, and comments. It means so much and gives me a boost of strength and hope that feels equally as strong as the Abraxane chemotherapy I receive. Yesterday in the mail, I received two packages with this lovely note: “Sharron, your Compact Family is thinking of you and we love you. From K.E.” In those packages were an Amazon gift card and two of the coolest ice tea/smoothie spoons I have ever seen. One has engraved in its bowl “A spoonful of strength” and the other one says “Get well spoon.” Plus, two spoons make a Compact-worthy musical instrument! I sat on the sofa and cried happy tears at this tangible witness to caring friendship and support.

Yes, one of the most important lessons I’ve learned from The Compact and my circle of friends from that group is that although I need so very little, I am so grateful for these relationships that enrich life and illustrate so perfectly the power of community and circles of connection. Thank you, friends, for thinking of me. Whether you call it synchronicity, karma, or divine intervention, your kind and beautiful gift arrived on a difficult day and made it oh so much better. I am grateful. Three cheers for community–in all its forms!

Reframing for “Yes”

Last time I wrote about a daunting and discombobulating series of “no’s” I’d been experiencing. I know a lot of us have encountered “no’s” during this strange time of pandemic, fear, and uncertainty. It’s a tough thing–living in “no-no land.” If we focus exclusively on the “no’s,” we soon find that is all we can see.

I don’t know about you, but I do not want to be defined or judged by my “no’s.” Yes, “no’s” have a role to play in life, but they will never be the last word in my life. The key to neutralizing the “no’s” is to reframe them for some big, whopping “yeses.”

For example, when our bucket list trip to the isle of Iona was cancelled this summer, we decided we’d go to the shore once a month. At least we could enjoy walking that thin space at water’s edge and benefit from some negative ions. And we did. And it was wonderful. And reframing our travel plans into a “yes” yielded even more “yeses.”

One of the “yeses” the first beach trip yielded was a GPS route that took us a particular way (not to be repeated on the remaining trips). I just happened to look off to my right at just the right moment to see a sign for M.D. Anderson Cancer Clinic. I had no clue that M.D. Anderson had partnership campuses, and one of them was right there in Camden, New Jersey, with Cooper Health. We feel like this was a big divine “yes” that has already yielded even more “yeses.” See that’s the thing: the “no’s” will gladly multiply to bring you down, so wouldn’t you rather reframe for “yes” and multiply goodness and love?

Another example is cancer. There are “no’s” aplenty when it comes to life with metastatic breast cancer. Those “no’s” will gladly define you if you let them. We usually pit the patient against the cancer with words like “battle” and “war.” For some folks those are the right words and approach. I used those words the first time around in 2004. Now, however, I look more at cancer as teacher and companion rather than adversary or evil. After all, cancer is part of me, not some random exterior foe that picked me out of the crowd for a beating.

Some of my reframed “yeses” of cancer are: 1) I live more in the present moment, and my understanding of time is shifting; 2) I am finally making the main things the main things and shedding all that is extraneous to my life’s purpose; and 3) I am at long last finding and using the voice of my true self. These three “yeses” have neutralized a whole lot of “no’s.” And the “yeses” just keep multiplying. Sometimes a “yes” can be as simple and delightful as taking five minutes to observe and appreciate our cat’s catishness.

Maybe you could benefit from reframing some of your “no’s” into “yeses.” Pick a “no” and look for a gift around it. The gifts may be hard to find at first because we humans are conditioned to find the “no’s.” Keep at it, and one will appear. It might be simple: We had two days of rain that prevented me from working in the garden. A reframe would be something like this: I couldn’t work in the garden, but God provided much needed rain for both plants and animals.

Begin with small reframes and regular practice. It might even become a part of your spiritual disciplines if so inclined. Note: Bigger, more painful “no’s” often require more than reframing. Reframing can help, but do consider seeking therapy and/or spiritual accompaniment. Taking care of you matters. After all, it’s pretty tough to love God and neighbor if you’re not real keen on yourself. Thank you for sending a “yes” my way by stopping in!

Reflection on my first “Cancerversary”

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About this time one year ago, I was headed home from a church council meeting when I received a call from “Unknown.” On a hunch I pulled over and took the call. It was my primary  care physician–bless her–with the news I had already been steeling myself to receive. “Your biopsies were positive,” she said.

Yep, my old teacher cancer had returned after 14 years, metastasizing to my rib, back, hip, peritoneal and lung fluid (ascites). My very kind and thorough doctor promised to try to get me in with an oncologist in whom she had absolute trust, and she did. Within a couple of weeks I was receiving “palliative” chemotherapy every week (talk about a sobering turn of events). Taxol knocked out the problem with the ascites in short order, and to-date the existing lesions have remained stable with no new spots present on this summer’s CT scan.

Today (September 20, 2019) I celebrate this strange sort of anniversary, my first METS “Cancerversary.” It’s been a strange year indeed, with changes, losses, and a new measure of normal that has included:

  • Going from pink hair to no hair (but cool hats) to salt-and-pepper wavy hair,
  • Transitioning from working 50-70 hours a week to medical disability (I prefer to refer to it as my unplanned sabbatical),
  • Grieving the loss of the pastoral vocation that I truly love (at least the way I’ve been accustomed to ministering to others),
  • Trying to figure out what to do with myself now that I’m living in what my oncology team graciously refers to as “retirement,”
  • Watching myself age about a decade in twelve months,
  • Slurping more green smoothies, eating more salads and beans, and drinking more anti-cancer tea than I’d ever thought a human could consume,
  • Learning a new “normal” thanks to a variety of chemo side effects,
  • Discovering that multi-tasking and grossly overstuffed schedules are highly overrated,
  • and learning that, yes Sharron, our bodies really do have limits and if you push it too far for too long there will be a price to pay.

Yes, there’s been a fair share of loss and grief and pain in these last 365 days. But the yucky stuff will never get the last word in my life. There have also been some amazing gifts and “aha moments” during this trip around the sun with cancer. Here are a few highlights:

  • The very first thing I do every morning before my feet hit the floor is say “Thank you, God, for another day of life.” And I MEAN it with all my heart. Life is so precious and fleeting and beautiful. We need to celebrate every single day.
  • My beloved husband and I have found ways to spend more quality time together and savor every moment that we can squeeze out of each day.
  • Relationships with family and friends have taken on new poignancy, meaning, and vitality. I love and value you all SO much!
  • Emotions and chronological time are like amusement park rides–just hang on and prepare for change. Nothing lasts. Not pain. Not sadness. Not fear. Not joy. Not even the present moment (which is the very best place to be, I’m learning).
  • Cancer is not a death sentence. It’s a LIFE sentence. You learn while living with cancer what it means to savor life and appreciate everything. (Well most of the time. There have been a few moments that just plain suck.)
  • Creation is absolutely amazing. If I want to hug a tree, I will hug that tree for all I’m worth. I’ll smile at and speak to strangers. I can spend an hour just watching our new cat and marveling at how brilliant she is. I thank the plants before harvesting their bounty in our garden. So much of life takes on a brighter hue and vibrancy when you realize that we all contain the imprint of the universe and the breath of the Creator’s Spirit. Everyone matters and is beloved. Realizing and embracing this will change your life–trust me on this.
  • Hope is real. Attitude matters. Naps are bliss. Love wins.

So cancer, my teacher and companion, happy first anniversary. I can’t say that you’re my number one choice for how this life thing is going to play itself out, but here we are. So thank you for all that you’ve taught me this year about appreciating people, creation, and the present moment. Thank you for finally getting me to grind my overworked gears to a screeching halt so that I can finally listen for the Spirit’s whisper and divine direction. And, thank you for teaching me how to live better and love better. Yes, thank you.

That said, I still have a lot of living and learning to do, so let’s blow out the anniversary candle, raise high the glass of green smoothie, and keep on keepin’ on. L’Chaim!

(Photo: Jens Comiotto-Mayer, Creative Commons. Thanks!)

 

In Praise of “Pond Scum”

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My morning “pond scum” ingredients. YUM!

Most of us living in North America fail the adequate nutrition test. In the land where Congress classed pizza as a vegetable (yes, really), it’s no wonder that getting enough servings of nutritious fruits and vegetables can be a challenge for the average American diner. I’ve always been a relatively healthy eater: I try to buy organic and local when I can, I’ve been mostly vegetarian for five+ years, and functionally vegan for almost three years. Cheese was my major fail in managing a completely vegan diet, but then we all have our challenges.

Enter a diagnosis of estrogen positive, stage IV breast cancer in September, 2018. Bye, bye cheese; hello full-on vegan diet! It was time to get 110% serious about nutrition. After all, diet appears to be partially responsible for some 30-40% of all cancers. More research is needed, but I’m with Hippocrates who knew the value of nutrition centuries before vegan was hip.

Let food be thy medicine and medicine be thy food.  — Hippocrates

My family and friends have become well acquainted with what I affectionately call my “pond scum” drinks. These green concoctions earned their name because, well, they LOOK like pond scum. The taste is actually a quite delicious combination of banana, apple, carrot, dark leafy greens (kale, Swiss chard, spinach are my favorites), blueberries, and filtered water, all whirled into a smoothie in my handy Ninja. The morning version includes a scoop of Greens First powder that delivers an extra 15+ servings of fruits, veggies, and antioxidents. Don’t knock it until you’ve tried it!

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Some of my favorite cookbooks. I also drink a LOT of herb tea in lovely mugs, like this Yogi brand DeTox tea.

I’m not suggesting that everyone choose a 100% vegan diet and forego caffeine, sugar, oils, and alcohol. This is my choice to give my body every chance possible to heal itself in combination with western allopathic medicine (i.e. chemotherapy). I’ve been influenced by the work of T. Colin Campbell, Ph.D.,John McDougall, M.D.Joel Fuhrman, M.D., and Forks over Knives. What I am suggesting is that you consider some diet changes before you are diagnosed with cancer, diabetes, heart disease, or other serious illness.

When diet is wrong, medicine is of no use. When diet is correct, medicine is of no need. — ancient Ayurvedic proverb

Sure, diet isn’t everything when it comes to health, but it is a major component. I’ll be citing the book Radical Remission frequently over the next few months because it’s had a huge impact on my approach to addressing my cancer. In this book, author and researcher Kelly Turner, Ph.D., explores nine key factors that cancer survivors share. Guess what? Radically altering your diet is one of those nine factors. In fact, it’s the very first factor Turner addresses. Your diet really does matter.

If you’re in great health, give thanks. If you feel that your health is slipping and you know that stress, lack of exercise, and a bad diet are markers of your lifestyle, take a deep breath and consider some changes–FAST. If you are dealing with cancer or another serious illness, consider how a healthier diet might be able to support your treatments. Do, however, include your care providers in discussions about nutrition and any supplements or complementary therapies you are considering. Above all, nurture your spiritual life and check out what your sacred texts have to say about food and nutrition. You might be surprised. In the meantime, I raise my glass of “pond scum” to your health–and to mine. Be blessed!

Disclaimer: I’m definitely not a health professional, but I’m in the business of learning all that I can to try to cajole my cancer into radical remission. If I can be of any help to you, great! Just know that what I write are my own opinions and reflect my own experience. When you find yourself living with a life-threatening illness or chronic condition, YOU are your best advocate. Learn all that you can, and don’t be afraid to ask questions or get additional professional opinions.

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.)