Love your liver

I must admit that I’ve never been a big fan of liver. Maybe it goes back to having to eat it as a child, once even cleverly disguised as country fried steak (no amount of breading and gravy can hide that distinctive taste). The only way I can stomach it is all jazzed up as pate.

Image: Wikimedia Commons

While I may never love liver, I am learning to love my own liver. I never gave it much thought until I was diagnosed with metastatic breast cancer. Then I began to understand just how important this strange looking organ is as I watched various numbers on my lab reports start to go haywire this past summer, things on my comprehensive metabolic panel like alkaline phosphatase, ALT, and AST. What followed was a series of tests to try to figure out what was going on: a liver biopsy, an MRI, a PET/CT, and a triphasic CT. The PET/CT and triphasic CT finally revealed the presence of metastatic liver lesions.

This would explain the sudden weight loss, the inability to digest my food fully, the presence of repeated plural effusions and ascites. Within a span of days I went from walking four or five miles a day to barely being able to walk up the stairs. It was scary stuff. Add to the physical issues the fact that we were also moving to a new state and had to get a house on the market and packed up. Yikes!

Fortunately my new oncologist wasn’t overly worried and felt that the chemo we already had planned to address the rising cancer markers would also address the liver mets. And if it doesn’t, he told me, there are other ways to address them. So while what was a minor bump in the road turned into a pothole of sizable proportions, it is nowhere near the end of the road. My markers have come down significantly after only one cycle of Abraxane, and my liver numbers are stable or dropping. Whew! Come on little yew tree with your bound protein molecule, do your thing to bring this body back into balance.

Image: Wikimedia Commons

What’s the point of this post? Learn to love your liver now–before you are diagnosed with liver mets and/or stage four cancer. Begin an anti-cancer lifestyle now and take care to the best of your ability of your body for you are fearfully and wonderfully made. Whether you love liver and onions or despise the stuff, well, that’s your call.

Check out these facts about your liver and read more about this fascinating organ here:

  1. Largest glandular organ – Our liver is the largest glandular organ of the human body and the second largest organ besides our skin.
  2. Multifunctional – Our liver simultaneously performs over 200 important functions for the body. Some of these important functions include supplying glucose to the brain, combating infections, and storing nutrients.
  3. It contains fat – 10% of our liver is made up of fat. If the fat content in the liver goes above 10% it is considered a “fatty liver” and makes you more likely to develop type 2 diabetes.
  4. It stocks iron – Our liver stores important vitamins and nutrients from the food we eat and stocks them up for when we need them later.
  5. Detoxifier – Our liver detoxifies the harmful things we take in like alcohol and drugs. Without the liver the body cannot process these items.
  6. Creator of blood – The liver creates the blood that circulates in our bodies. In fact, the liver starts producing blood before we are born. Without the liver there would be no blood and no life.
  7. It regenerates – Our liver has the amazing ability to regenerate itself, making liver transplant possible. When people donate half their liver, the remaining part of the liver regenerates the section that was removed.

Ch…ch…ch…changes…

Oh yes! This has been a season of so many changes. Not just for me but for all of us. 2020 will likely go down in the books as one of the strangest years in history. There’s been so much loss, grief, change (good and bad, personal and communal), and uncertainty. Some days it feels like living with metastatic breast cancer is a microcosm of the greater narrative of which we are all a part.

For us the changes came fast and furious beginning this summer. My cancer situation has become more complicated, and we discerned that major lifestyle changes needed to happen. First, my beloved husband decided to leave administrative ministry to return to the parish. God opened the way for us to become part of an amazing congregation in Maryland. This turn of events also enabled us to live right next to the place where the Susquehanna River flows into the Chesapeake Bay, complete with a healing and gorgeous water view. Already I feel more centered and grounded and embraced by community. This move has also put us two hours closer to MD Anderson Cancer Center–Cooper where I am now being treated.

We are grateful to family and friends who helped us pack up our Harrisburg house, which sold four days after going on the market. We are thankful for the many, many prayers, notes, cards, and kind words extended during this transition time. Of course, we both miss many good friends, neighbors, and colleagues, along with our church family at Christ Lutheran on Allison Hill.

Here’s what the last couple of months have taught me:

  1. Change rarely happens without some level of pain and risk.

2. Living in the present moment is really the only feasible option. The past cannot be recaptured, and the future is uncertain (but filled with possibility).

3. If you’re not willing to take risks you won’t get very far, and you just may miss out on the universe’s calling for you.

4. Life is filled with beauty, awe, and wonder, but we have to pay attention to see it. And, we need to practice gratitude.

5. The world will always try to sell us fear and anger, but the movement of the cosmos is toward love and unity. Lean in to one another and learn from your differences, celebrate your commonalities, and build bridges.

6. Connect. Connect. Connect. We are better together than we are apart.

7. Love wins. Every. Single. Time.

Right now

Image: Kelyan, Creative Commons License.

Letting there be room for not knowing is the most important thing of all. When there’s a big disappointment, we don’t know if that’s the end of the story. It may just be the beginning of a great adventure. Life is like that. We don’t know anything. We call something bad; we call it good. But really we just don’t know. — Pema Chodron

How are you doing right now? This minute? Are you fully grounded and invested in what you doing (which is reading a blog post)? Are you able to let the past go? Are you ready to stop pining for an uncertain future? Are you open to experiencing life in a radically different way? If so, then living in the now is the answer.

Don’t get me wrong. I’m not trying to give a trite answer to a difficult situation in trying times. I want you (and me!) to take a deep cleansing breath or two and commit to this present moment in this particular day. This practice has been an important component of my self-care in a recent season of big, bitter NO’s.

Image: Sean MacEntee, Creative Commons License

It was tempting to dismiss my grief and uncertainty. After all, a lot of folks have much greater challenges and daunting problems. But that would be an unhealthy and unhelpful way of dealing with my emotions. Instead, I have chosen to honor the emotions and situations that have triggered them. That way I can move through them in a way that honors both my dignity, humanity, and context. For me this has been a time for lament.

My list of big, bitter NO’s began back in late February when my health didn’t seem stable enough to take part in this year’s Women’s Pilgrimage to Israel and the West Bank. Turns out none of the pilgrims were able to go due to COVID=19. Some of my sisters-in-travel-and-faith didn’t get their NO until they were standing in the airport check-in line, and one woman was already in the air flying to meet up with the group for the last leg of the trip.

Quickly deducing this was going to be a strange year for travel, we decided to install a backyard pool. Wouldn’t the water be good exercise and stress-reducing? Our kids might come around more. All good and happy thoughts. Do you know how difficult it is to find an above ground pool kit thanks to, yep you guessed it, COVID-19? Suffice it to say there was no pool to be found in Harrisburg. We found a bigger one than we really wanted in the midwest and ordered it, only to discover that the only place it would fit without significant terrain alteration and a construction permit was directly under power lines. Thankfully, the company said yes to the return and we were not out the money. This was one of the smaller NOs in the season.

The very worst NO was the murder of one of our church family in a horrible act of fear and violence–a wrong place/wrong time scenario that took from this life a truly bright star. It has shaken and shaped our communal worship and online gatherings. The effects of this young man’s death will affect our community and his family for a long time to come.

Another big NO was the cancellation of our bucket list trip, an Iona Pilgrimage with John Philip Newell, again thanks to COVID-19. This trip was something I’d been hoping for since 2001 when I stood at Heritage Wharf in the shadow of Oban and looked across the firth toward the Isle of Mull, beyond which Iona rises across the water. I didn’t make it on that trip, and I won’t make it in 2020. That was indeed a big NO, especially since we made the decision not to push the reservation forward until we have a handle on the really big NO–my health.

Concurrent with the rise of the Corona Virus, my CA 27-29 tumor markers started to rise from the low sixties, to above ninety, and onward and upward through 100. The last test revealed a jump beyond 200. This means the cancer is spreading. I had my first bone scan and lit up like a Christmas Tree with metastatic lesions (mets) from my skull to my femurs and everywhere in between in my increasingly fragile frame. So it’s bye-bye Ibrance (and I say good riddance) and hello Faslodex and Verzenio. Both drugs have some uncomfortable and dangerous side effects, so I am approaching this change with trepidation. We are definitely in a state of unknowing with this big NO.

What does one do with a string of big, bitter NO’s? You might want to try this practice I find helpful: Take a few deep centering breaths, ground yourself by walking barefoot or lounging in the grass, and focus on the present moment. Don’t bring an agenda to your time. Bring an openness to be present to life and listen to the guidance of your higher power. Invite guidance and wisdom to reframe the problem, situation, or experience. Try to look at the situation with fresh eyes and see what the Creator has to reveal.

Image: Sustainable Economics Law Center, Creative Commons License

Don’t expect immediate answers. You might get one, but my experience is that these bright and hopeful reframed yeses come along when you least expect them but are primed to receive them. You can’t spot a divine yes when you’re looking back at your past or leaning too far into the future. You can’t spot an abundant yes if you’re too focused on what you think the yes should be. Be open. Hold loosely. Embrace unknowing as holy soil in which to take root and learn. Perhaps the key for all of us in this strange, liminal time is simply to pay attention, live fully in the moment, and embrace the uncomfortable and vulnerable position of not knowing. The more we reframe our NOs, the more likely we encounter divine yeses.

Next time I’ll share how I listened for and received the blessing of some unexpected yeses. Until then, be brave, be kind, and live fully each precious moment.

Remember that you are (star)dust…

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Ash Wednesday held new meaning for me this year with the stage IV cancer diagnosis. I’m six days in to my unplanned medical sabbatical (what I prefer to call my time on medical disability), and it’s been sobering to observe my body finally coming off of the adrenaline high that kept me going for far too long. This day has given me the permission to speak truth: I am tired. I am weary. My body needs this time of rest if there’s any chance to recover, heal, and hear those magic words “No Evidence of Disease.” I won’t get there by depending on myself or any imagined “super hero” abilities to defy death and appear magically in control.

“Remember that you are dust, and to dust you shall return.” These are the powerful and painful words my friend and colleague said as she marked my forehead with ashes this morning. I deliberately chose the quiet chapel service at the church she serves because I needed safe space to experience this moment in a new way, in the shadow of dis-ease and with the words “terminal” and “palliative” still ringing in my ears.

Don’t get me wrong; I’m not throwing in the towel. I’m not crying “uncle” to the cancer cells. Not a chance! What I am doing is entering the season of Lent by acknowledging that the shadow of death is just over my shoulder, and my hope lies in God and God alone. But this is true for all of us. None of us is promised more than the present moment; we just choose to live like we have an unlimited span of life ahead. We can wipe that cross off our foreheads, but we can’t erase the truth of it.

Yep, nothing like Ash Wednesday and a cancer diagnosis to set the record straight. This is also a powerful gift to carry into the 40 days of Lent. Without this journey to the cross, without death, there can be no resurrection and no promise of real and lasting life. Only by walking the road to Jerusalem with Jesus and looking unflinchingly at death is there lasting hope or reason to live for something beyond oneself. This is the only path to the risen Christ.

Death will come for all of us–sooner or later. Deny it all you want; it won’t change the truth of it. Every day is a gift of God. Every breath is Spirit-infused. All of creation is held together in Christ. Or, as Eugene Peterson so beautifully renders this idea in The Message (Colossians 1:18b-20):

“From beginning to end he’s there, towering far above everything, everyone. So spacious is he, so roomy, that everything of God finds its proper place in him without crowding. Not only that, but all the broken and dislocated pieces of the universe—people and things, animals and atoms—get properly fixed and fit together in vibrant harmonies, all because of his death, his blood that poured down from the cross.”

None of us makes it to Easter without the painful reality of Lent. We need that ash cross to tattoo truth smack between our eyes. But here’s the thing: we are not just the dust you dump out of the vacuum bag into the rubbish bin. We are stardust. We are inextricably linked to one another, to all of creation, and to the Christ.

Gianni cc

As my friend marked that ashen cross on my forehead and said those somber words, I took courage and comfort in knowing there is so much more. Cancer may strip me of all my illusions of security, invincibility, and layers of self-defined identity and worth, but it will never have the last word. That belongs to God, and here is truth for me–and for you, for all of us: “Remember that you are the stuff of stardust, and to stardust you shall return.”

(Photos: sblezard and Gianni, Creative Commons License. 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.

Hair Today. Gone Tomorrow.

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Today’s topic is about chemo and hair loss, although there’s a whole lot more going on than just the demise of my dearly beloved fierce pink tresses. The real subjects are attachments, fear, and letting go–three much more powerful issues that affect not only those in cancer treatment but pretty much all human beings at some point in life.

I went through the whole hair loss thing with the first cancer experience. Taking what measure of control I could, I had my head shaved and sent the ponytail to Locks of Love. It really didn’t bother me that much that I can remember. Perhaps it was because I was sure it would grow back, AND I’d have the added benefit of an outrageously expensive but effective perm. (Note: You have to look for the small bright spots and opportunities to laugh when dealing with cancer or any other life-threatening medical condition.)

Ready for chemo in 2004 with a pony tail for Locks of Love

This time felt different. Perhaps it was the difficulty of letting go of that brave, bright color my daughter so lovingly applied to my hair–a hot pink badge of courage. Maybe it was the comments from folks that this time my hair might not grow back like it did a decade plus ago; after all we’re dealing with long term treatment now as opposed to a once and done experience. It could be the reality of just one more indignity and loss of the illusion of control. After pondering the situation for a couple of months and getting used to my rad baldness and wardrobe of really cool hats, I think it’s something more–something that affects virtually all of us. That something is the power of attachments and the fear of letting go.

You see, the initial tears and sadness of having my beloved shave my head have given way to acceptance and even a kind of love for my bald look. It’s sassy. It’s real. It doesn’t try to pretend that my shorn skull is a fashion statement rather than a side effect of chemo. It’s not, in short, a cover-up of all that’s happening in my life. And therein lies the dilemma.

I am now quite okay with my bald pate and the many lovely, quirky, and precious caps and hats that so many friends and family have made and/or given (I treasure your love and care. Thank you!). Yet sometimes I wonder if I’m becoming too attached to the present state of being. You’d probably never know I am living with stage four cancer if it weren’t for a shiny noggin (and the persistent fatigue). After all, bald IS beautiful, and I’ve embraced rocking the look.

My Buddhist friends will say that nothing lasts. The Buddha teaches that almost all of our struggles–anxiety, anger, sadness, frustration, grief, worry, despair, etc.–all stem from one source: being too tightly attached to something or someone. Jesus had a few things to say about attachments and possessions, too (Check out Mark 10:17-31, Luke 6:32-36, Luke 12:15, Luke 14:33, Luke 15:11-32, Luke 18:18-22, Matthew 5:1-7:29, Matthew 6:2-4, Matthew 6:19-25, Matthew 16:24-26, Matthew 23:25-26 to get started. Pastor, teach thyself!).

I can understand how past attachments may have contributed to my present state of dis-ease, and I confess that for me letting go is definitely not as easy as I would like for it to be. I also know I’m not alone. If it was easy to let go there would be far fewer struggles and pain. We humans are not experts at holding loosely to our lives, possessions, and relationships. Sure, some things are easier to let go of than others, but we all have our “sticky stuff” that prevents us from being truly free.

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To learn to let go of attachments takes intention and practice. Whether you choose prayer, meditation, or some other discipline, the important thing I’m learning is to be gentle with oneself in the process. My most difficult attachment is to the value (both real and perceived) of my vocational life. I’ve been taught to work hard, to work until the job is done, and to do the very best work possible. Unfortunately, a good teaching has become over time both a coping mechanism to avoid dealing with past pain in my life and an attachment that is detrimental to my overall health and well-being (not to mention that of my loved ones). I could definitely take a regular seat in an Overworkers Anonymous meeting!

And here’s the thing: There is no badge of honor for working oneself to the bone, to ill health, or to death. My friends, don’t wait for the death part to figure this out, no matter what attachment(s) to which you may be clinging with ferocity. Learn to let go while you have the choice and opportunity. Do it better than I have done until now. Don’t wait for cancer, heartbreak, or other life altering event to stop you in your tracks and force you to learn. Oh, and rock your wonderful self just as you are. You are enough. You are beloved! It’s okay to let go and be you.

Note: Need somewhere to start? Check out Leo Baubuta’s blog post “The Zen Habits Guide to Letting Go of Attachments.” He offers five practices you may find helpful.

 

 

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…