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!

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.

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.

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!

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.

Huh?

Amazing how beautiful hollowed out bones can be! Photo: Creative Commons

Some of you have wondered how things are with my health after my last post about similarities of life with stage four mets and life in the wake of pandemic. Actually, I’m still trying to figure out what’s going on. What’s a result of cancer? What’s normal aging? Why for the past three months have I had a few days each month where I run a low grade fever (between 99-100.7) ache like crazy, am mildly nauseous, and completely exhausted?

This much I know. My oncologist ordered a CT scan in April following three increases in a row in my CA 27-29 tumor marker. It’s not horribly high or anything, but it’s inching up there. The CT scan revealed the following about the state of my bones.

MUSCULOSKELETAL: Extensive metastatic lesions of bone again seen, exhibiting heterogeneous sclerosis, overall extent greater than before although it is noted that even successful treatment of metastatic lesions might result in greater sclerotic
conspicuity on conventional CT; scintigraphy can be useful for quantifying metabolic activity within. Mild inferior-endplate compression fracture of T7, new from previous exam, in association with sclerosis; no significant retropulsion.”

The radiologist providing the CT report noted “Increased extent of heterogeneously-sclerotic metastatic disease of bone, newly resulting in a minor inferior-endplate compression fracture of T7. Advise consideration of radionuclide bone scan or even PET to determine how much of this is metabolically active. No suggestion of developing metastatic disease in soft tissue.” So I had my first ever head to toe bone scan. And this is what it revealed…

FINDINGS: There is diffuse osseous metastatic disease throughout the axial and proximal appendicular skeleton with lesions identified throughout the skull, bilateral ribs, spine, pelvis, and femora.”

Yep. This is pretty much the entire report from the bone scan I had a couple of weeks ago. Well, duh! Oh, and the radiologist did note that “There is bilateral renal function.” Thank goodness! But that’s it for the report. I was confused. Even after meeting with members of my oncology team yesterday and talking with my oncologist later by phone, I’m still not 100 percent sure what’s going on. Like “doubting” Thomas, unless I can see on a screen how many parts of my skeleton light up like a Christmas tree, I will not be satisfied. Yep. I’m pretty big on visualization.

An example of sclerotic breast cancer metastisized to the pelvis. Not me.
Photo: James Heilman, M.D. Wikimedia Commons

The good news is no soft tissue or organ involvement. This is what we want to hear for sure. The not so great news, the “huh” news, is about the spread of the metastatic lesions, or mets. To me, with all my former-English-teacher-word-parsing, Dr. Googling, obsessive record-keeping, limited scientific knowledge, and attempts to stay fully connected to my body, this news feels unsettling. In looking back to the CT results from September 2018, only a few potential lesions were noted. Now we’re using the word “Extensive” to describe the situation? Hello? How extensive are we talking here? Instead of termites, this house has cancer.

My oncologist, however, seemed nonplussed. No need to change treatments or anything just yet. This bone scan gives us a baseline from which to work. The compression fracture will not repair itself, but guess what? There’s GLUE for that! And radiation if the bone pain becomes too difficult to bear. In fact, she suggests I go ahead and consult with a radiation oncologist.

And still, Rob and I shake our heads and say, “Huh?” What do we really know from this? Not as much as we’d like for sure. How do you plan a life around such generalities, devastating losses, and small victories and joys? What about travel since, I’m classed as high risk for COVID-19? What if we don’t travel? What potential losses might there be?

It appears that the cancer is continuing a slow, steady progression in my bones. So far there is no soft tissue or organ involvement. This is a marathon, not a sprint. I’m going to have to be more careful to avoid putting stress on my bones. At some point I will become a fall risk. I wish I could figure out what’s going on with these bouts of fever and total malaise. But for now, overall, things are pretty good, and I have much for which to be grateful. And I am grateful!

What has cancer taught me recently? A little planning is a good thing; too much planning is a waste of precious time. There’s much more living to be done than hours in a day. Letting go is awfully hard, but it’s the only way to experience life in the moment, to seize the day, and experience every precious atom and molecule spinning and dancing. Don’t look back with regret or nostalgia. The past tense lens, for any of us, does not offer a clear, true view. It is clouded by emotions, fear, longing, and rationalizations. Loving God and loving neighbor is plenty enough to focus on without any religious wars or theological conundrums. The Christ is too big to get caught up in our petty little control wars, too vast to be hampered by our desire to control the divine impulse. Let God be God and hang on for the ride. Life is precious. Most things don’t matter much at all: people do, justice and fairness do, being satisfied with enough matters, and love always wins.

I’m learning a lot from my teacher Cancer. Some of the lessons are so hard, but I wouldn’t miss the aha moments and the wisdom offered. I wouldn’t trade one second of this precious life, and yes I pray for many more years–I’m only human, after all. But I just don’t know, and I’m not going to let that spoil the party. We’ve got some serious living to do, my friends! Thanks for stopping in. Take care. Stay safe. Love all you can with all you’ve got. Live. Really live.

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.

Birthday Giving Challenge

5045502202_1d867c8a41_c

Birthday celebrations are considerably different thanks to COVID-19, but then much of life is different now. On April 4, I will celebrate my 59th birthday. I have everything I need and want already. I am simply grateful to be alive 19 months after my stage IV cancer diagnosis. Every single day is gift, even these unusual days spent sheltering at home.

In honor of a new reality and our current health crisis, I want to do something different for my birthday. That something is a digital fund-raiser to benefit Christ Lutheran Church Health Ministries, an amazing community ministry of the congregation of which I am a member. Services include a nurse-run walk-in clinic in partnership with Holy Spirit Hospital that serves uninsured and underinsured area residents. Other services offered include a dental clinic, prenatal clinic, urgent care clinic, and a durable medical goods closet. You can learn more about the ministry by visiting the website here.

Christ Health Clinic 1

I asked our pastor, The Rev. Drew Stockstill, how I might help, and here’s what he said: “In the midst of the Covid-19 pandemic, The Medical Outreach Clinic continues to see sick patients, meeting the need of our most vulnerable neighbors, while also keeping mildly sick patients out of hospitals that are already under a great strain. Funds are needed to purchase over-the-counter medications and medical supplies.”

Here’s the birthday challenge/opportunity I extend to you:

I received a Thrivent Action Team Grant of $250 to use as challenge money in hopes of at least doubling that amount to benefit the immediate needs of Christ Lutheran Health Ministries. Please consider a donation by either using the secure PayPal link here (you do not need a PayPal account) or by mailing a gift to Christ Lutheran Church, attn. Health Ministries, 124 S 13th St, Harrisburg, PA 17104. Please note “digital fundraiser” in the PayPal note section or on your check so we can at least try to track the total (or PM me if you prefer).

Christ Health Clinic 2

These are tough, scary times for many people, but I know that many of us are looking for ways to help, to make a difference. Thank you in advance for helping as you are able, thanks to Thrivent for supporting this fundraiser through a generous Action Team Grant, and an EXTRA-SPECIAL thank you to the nurses, staff, and volunteers of Christ Health Ministries for continuing to be a “beacon on the hill” in the midst of pandemic. An extra $500 or so will go a long way toward helping stock the clinic.

Oh, and don’t forget to give thanks for every single day of life. You are worth it! Please stay safe.

(Photos: Will Clayton, Creative Commons, and Christ Lutheran Church, Harrisburg)