I get by…with a little help from my friends

Toasty warm in a matching handcrafted set by my dear friend, Sarah.

It’s been a challenging year for all of us, and frankly I’m glad to see 2020 pass on by tonight. My prayer is that 2021 will be a better year for all of us. It can be if we lean in, strengthen our web of connections, and pay attention to life.

Living with a chronic and/or terminal condition can be a lonely, confusing, and difficult journey. Most folks are really good about responding to the initial crisis, but when it settles into weeks, months, or years of treatments, medical procedures and appointments, and life adjustments things can get complicated. It’s tough to know what to say or do when your family and/or friends are hurting. My advice? Each person’s situation and needs are different. But try. It’s better to be awkward and say the wrong thing than to say nothing at all or just slip out of contact.

For me the situation is two-fold. First, I don’t like to bother folks with my problems, and 2) it’s one of my growing edges to ask for and gratefully receive help. Thankfully, many good friends and my amazing extended family continue to pray and walk with me on this journey, and that makes all the difference in the world.

Last week I wore this new hat crafted by my friend, June.

When I see your posts and “likes” on Facebook in response to my blog entries or posts, it does wonders to pep me up and keep me going. When a card or note arrives in the mail, it’s a big boost. Why? I know that prayer works, community matters, and people care.

Recently I received gifts of beautiful handcrafted (and WARM) hats and accessories. When I wear the hats and scarves or when I cuddle under a gift blanket during chemo, I carry you with me, and I am blessed by your ministry of presence and caring. When I gaze on the beauty of flowers (a luxury I rarely allow myself to purchase), your love and care are right there. Yes, presence and caring; even though COVID is keeping us apart, it’s these tangible signs of your love and solidarity keep me bounding up that staircase at M.D. Anderson–Cooper on the wings of eagles to receive my chemo and fully and faithfully live another day.

A friend and colleague who is also undergoing cancer treatments sent me this awesome sticker that now graces the front of my treatment notebook. Thank you, Courtney! Not 2021 Cancer!

Right now, most cancer patients cannot even have someone accompany them for treatment/procedures in an effort to keep us from COVID exposure. Little things like notes, texts, and practical expressions of love and support–like warm hats and socks and kind encouraging words–stand in for the lack of face-to-face time with friends and family.

On this last night of 2020, I want to thank all of you for the many ways you have lifted my spirits, augmented my courage, and kept me strong during a particularly grueling few months. I love you all and am so grateful to be a part of this wider, stronger web of connection that just continues to ripple across the cosmos. To my many friends, family, and colleagues who are living with chronic and terminal conditions, please know that I hold you in daily prayer. We are all stronger together, and don’t forget: We all get by with a little help from our friends. Thank you! Happy New (and better, please) Year!

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.

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.

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!)