cancer

Glaciers, Mountains, Fireweed and My Wife

donaeley7 Comments

This vantage point for the Mendenhall Glacier in Juneau is one of the most photographed views in Alaska.  This spot, which I could see from my office when I served in the Coast Guard, offered insight and reassurances as I watched my wife deal with metastatic cancer.

In the foreground is the muskeg meadow; wet, nutrient-rich, verdant, home to vast clumps of fireweed, Alaska’s state flower.  In the background, framed by the glacier, are the Mendenhall Towers; mountain peaks rising 1.3 miles straight up from near sea level.  These are young mountains, exposed as the vast icefield encasing them began to recede in the 1700’s.  First scraped clean by the ice field and continuously swept clean by snow, ice and wind, these peaks have little of the life of the fireweed meadow they preside over.

So different – the fireweed meadow and the rock pinnacles – yet no one would argue successfully that the meadow is more beautiful than the peaks, or vice versa.

The meadow produces; the peaks stand in testimony.  The fireweed meadow shows Alaska’s nurturing hand; the peaks show signs of Alaska’s harshest nature: hurricane force winds, snow and ice.

Like fireweed, many of us bloom because we happened to take root in the most accommodating and nurturing of soils.  Like the Mendenhall Towers, some of us are scraped clean by the harshness of life, whether it be our environment, disease, or tragedy.

Turning the comparison of the meadow and the peaks slightly in another direction, I can write that nearly all of us start in the bloom of youth and over time evolve to a form more pronounced, bearing the marks of the ice and wind of this world, still beautiful as God’s image bearers, but deeper, more complex, weathered and polished.

I watched Dona deal with a serious cancer since early 2014.  Most cancer sufferers are described as ‘fighting cancer’ or ‘enduring a long struggle with cancer.’  I appreciate the spirit and determination those descriptions signal.  But Dona did not fight her cancer, she let her oncologist do that.  Dona seemed to maneuver her cancer, somehow positioning the disease at a place where she could learn, grow, even flourish.  With each setback – a disappointing scan or lab report, a quality-of-life diminishing side-effect – I saw Dona maneuvering, adjusting, and finding a way to grow a little higher, like the Mendenhall Towers of Juneau; perhaps scraped and scoured a bit, but nonetheless ultimately towering over her disease.   

Where does this come from? 

As much as I would like to give her full credit I cannot.  I was with Dona for 43 years.  This is a new spirit.  She has always had many attractive traits: thoughtful, kind, empathic but, also, a relentless planner, troubleshooter; dedicated to seeing peril around the corner and making big plans to counter the threat.  Once she stored $2000 in a box after reading a report that cyber-terrorists could easily shutdown the electric power grid, making banks and ATM’s inoperable.  But once she faced her worst and most real crisis, she became less anxious, more relaxed, less out to prove something to herself.  When scan reports were not good, Dona took the news with courage, dignity, grace, humility; always encouraging and thanking her health care providers.

And she liked her ‘new metastatic self’.  She wrote about it on more than one occasion. 

I would not call this new outlook serenity.  A more serene person would have done less on-line shopping.  It was not stoicism either.  We were still quite anxious during each visit to the hospital.  As we waited for our oncologist to enter the treatment room, I would read her dumb jokes from the internet as a disruption. 

I am still struggling to define and understand the change.

Recently, I have described this change as Dona’s confidence in God’s big plans for her future.  Fear revolves around our thoughts about the unknown future and our imagining the worst of that which is unknown.  But she was convinced that she had a future, and it was a good one.  We prayed for a miracle of healing, for longevity.  That is not granted, but no matter, we still have a future, and it is glorious.

Tim Keller writes, “We are future-oriented beings, and so we must understand ourselves as being in a story that leads somewhere.  We cannot live without at least an implicit set of beliefs that our lives are building toward some end, some hope, to which our actions are contributing. We must imagine some end to life that transcends.”[1]

But that is not the whole story.  Hope and faith are essential, but we need some external help.  If it depends only on our personal resolve or insight we are back where we started – some of us succeed through a gift of temperament or fortitude, some not.

And we boast in the hope of the glory of God.  Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us. Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.

Romans 5:2b-5; 8:35, 37-39

It can only be the Spirit of God that vitalizes life, communicates God’s truth, and reassures of his eternal plan for us through the grace of Christ. 

What was great about this external strength was that when hardship came, I did not worry that Dona would not be able to endure it because it did not depend solely on her. I trust I will be able to draw on that same strength.

I so deeply miss her.

Dave Eley

[1] “Making Sense of God: An Invitation to the Skeptical” by Timothy Keller.

This is Mortality, this is Eternity

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By Dave Eley

On December 22, 2022, the day before the Great Buffalo Blizzard, we agreed with the oncologist to stop Dona’s cancer treatment and enroll her with Hospice.  Focus will be on comfort at home.  We feel okay about it. She will likely live longer on Hospice than on aggressive treatment. 

I’ll provide updates through https://www.caringbridge.org/visit/donaeley

Dona sleeps most of the day but is in no pain. Praise God. Although a bit confused at times and very weak, there is a calm and focus that must only come from the “peace of God that surpasses all understanding….guarding her heart and mind in Christ Jesus.” 

Medical science and technology have given us 8 great years and, according to Dona, some of her best years. (Seriously, see ‘I Like the New Metastatic Me. ) We are grateful to have been the recipient of a dozen or more cutting edge or proven treatments, (which worked well until wily cancer cells morphed and found a workaround) developed by the best researchers and engineers the world has to offer, and delivered by compassionate surgeons, doctors, technicians, and nurses.  But over time treatment has taken a toll.  Modern medicine has its limits. 

When the best efforts of our medical clinicians are overwhelmed and consumed by disease what is left?  For the Christian, it is the hope of the resurrection.  What does that look like?  Perhaps it is like the discovery of a masterpiece that was hidden when painted over with an inferior work of art.  As the later work flakes away due to time and the elements the earlier original is revealed, something beautiful and totally different.  Or, perhaps it is as simple as Jesus’ parable of the house built on a rock that leaves the home intact when the winds and rains come. (Matthew 7)

Dona with grandson #4 on Christmas Day 2022 after the Great Buffalo Blizzard

It is that underlying beauty, strength, and solid foundation that is now so evident in my wife. Yesterday, I told Dona, “When my time comes, I hope I can also face my mortality directly, look it square in the face without flinching.  But I think I will be frightened.”

She gazed at me for a minute, I was beginning to think she had drifted off, and then she said, “When your time comes God will give you grace and strength. But for now, you need to quit with the chipmunk cheeks.”

She was alluding to two posts she wrote early in her cancer journey.  The chipmunk cheek image is from John Piper, who writes:

Behold, I am about to rain bread from heaven for you, and the people shall go out and gather a day’s portion every day (Exodus 16:4).

God’s grace is like manna. God gives us “a day’s portion every day.” This is why Jesus taught us to pray for our “daily” bread, not “next week’s” bread.

We need to quit being chipmunks. We don’t need to try and stuff our cheeks with today’s manna, anxiously storing up fuel for the nasty winter we imagine around the corner. God doesn’t give us grace for our imaginations, he doesn’t give us grace for our chipmunk approach to life. (Emphasis mine.)

As Dona later reflected,

The hardcore truth is that this habitual way of viewing the big scary world can quickly become faith-numbing insanity. “Dona,” I say to myself, “where is God in all this worry about the future? What are you fretting about? Who do you believe is really in charge?”

Me, apparently…….God waits for us to wave our white flags and allow his grace to attend to our present needs and not for those imagined future troubles.  And that grace is sufficient to carry us through the day.”

So, as Dona says, I’m going to quit (try to quit) being a chipmunk and train myself through repetition, reminding myself of eternal truths, look for joy each day, and trust tomorrow, both for my life and especially for by wife’s, to the hand of God, who transcends our mortal limitations.

This is mortality, this is eternity.

What is Disappointment-Worthy?

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In an earlier post, I described how the ‘pre-cancer me’ had too many concerns, strong opinions, and preferences. I was living life poised to be disappointed at every turn. Disrupted travel plans, bad hair days and minor slights were all felt too deeply! It took metastatic cancer to bring more clarity, balance, and self-control to disappointment. I had gotten lazy, neglecting the hard work of self-examination, and taking control of my emotional reactions to disappointments. I like the new me, the metastatic me.

View from my balcony in
St Augustine, FL

My current disappointments are few or less intense because there are less things of this world that mean that much to me. I am vacationing and being with family in St Augustine, Florida. I write positioned to see the smooth coastline, hear the waves breaking, smell the sea breeze, and feel the sun warm my brittle bones. So heavenly and peaceful. But I am feeling increasingly detached from this experience as well as many others that have given me pleasure. This does not feel like a bad thing as I’m experiencing more peace of mind than I have been accustomed.

Anhedonia is a mental condition which describes a pervasive lack of interest in those things that use to give pleasure and enjoyment. It is a core symptom of depression.

As a retired mental health therapist, I have asked myself whether I am experiencing a symptom of clinical depression. Certainly, cancer sufferers have more depression than others. No one would be surprised to hear I was struggling with depression. But I am not. I have received a blessing amidst existential suffering.

“Set your mind on things above and not on things on earth, for you have died and your life is hidden in Christ.” (Colossians 3)

…and let us run with perseverance the race marked out for us.  Let us fix our eyes on Jesus the author and perfecter of our faith who for the joy set before him endured the cross, scorning its shame….consider this…so that you will not grow weary and lose heart.  (Hebrews 12:1b – 3)

Do not get me wrong, I feel pain, loss and sorrow. I am not cultivating a Buddhist mindset that sees all suffering originating from and sustained by human attachments. I WANT to be attached to those I love, and I want to enjoy the beauties all around me in this world. I am not numb to disappointments, rather I am having fewer of them because I’m learning through this disease what is ‘disappointment-worthy’.

There also seems to be a supernatural aspect to this ‘screening’ of life’s disappointments. I call this something, “training for eternal life”.

The apostle Paul in the letter to the church at Colossi exhorted the congregation “to set their affections on eternity with God.” Why? Because God wants to bless us. I am going to die, and you are going to die. So, as the author of Hebrews puts it, while we are enjoying this life it is a mercy to fix our eyes on Christ, the author, perfecter and finisher of our faith, and then we will not lose heart or grow weary as we soldier on, training to enjoy the eternal life ahead of us.

I can only think of one disappointment that would have devastating effects for me and for you. The absence of the presence of God due to unbelief or to poor teaching and training would make coping with incurable cancer unbearable.

Where do we go with this?

Continue to be disappointed, even heartbroken over the losses, travesties, and tragedies of life both for us, our loved ones, and for the countless, nameless sufferers throughout this broken world. To do so is to have the heart of God motivating us to call to out to Him for relief and rescue. But leave the disappointments from assaults on ego, the frustration of inconvenience, the slights and criticisms from others on the junk heap of the worthless and inconsequential.

Disappointments are not so bad if we allow them to whittle away at the vain and useless, and cling tenaciously to the grand promises of God – a future where God promises to make every injustice and injury right in the end!  The scriptures say God promises that every tear will be wiped away; all tears, not just the tears of heartache and loss, but the tears of anger, frustration, and petty disappointment. 

Can I get an Amen?

Advent, Afghanistan, Cancer, Hope

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Guest post by Dave Eley

At 716 Ministries, we just finished an intense, 3-week training course designed to help 18 Afghan evacuees, recent arrivals in Buffalo, adapt and succeed within the American work culture.  It was delivered in three languages – English, Dari, Pashto – to a diverse collection of farmers, soldiers, engineers, medics, professors, mechanics, government officials, taxi drivers.  We heard their stories.  Some came with their families; some, tragically, for their temporary safety, left wives and children behind. All left behind their material possessions, or at least what could not be carried in a small bag. 

What is the one thing you’d take if you had to leave your home, your country immediately?

Afghan Work Readiness Class, December 2021

I asked several students what they brought with them; what they packed of their identity. 

  • One woman, a professor, had 15 minutes to pack and flee to the Kabul airport.  Other than essentials, she took her perfumes.  She told me, “My fragrances are part of me, they are part of how I think of myself.”  I get it.  Her colognes reminded her of her essence. 
  • One man – farmer, corporal, citizen-soldier – proudly showed me his laminated wallet-sized certificates of recognition from the US Army, attesting to his contributions to various military deployments.  Operation Eagle, Operation Red Dagger, Operation Achilles.  He played these cards out before me as if presenting a winning poker hand, a royal flush or inside straight.
  • I am grateful for smart phones.  A person with a smart phone can flee a country with the family photo albums intact.  Children, moms, wives, husbands, handshakes with US military special forces.  One man, a mechanic, showed me a short video of his fancy footwork on the soccer field, dribbling around two opponents.  For some reason, this made me sad.  The bright red and yellow football ensembles, the shouting and clapping, the joy of a peaceful summer afternoon on the field with friends in Afghanistan. 
  • On the last day of class, we conducted mock job interviews.  We brought in eight potential employers and let the students rotate amongst them, practicing and refining their pitch.  This is the highlight of all our courses, where students grow in confidence with each successive interview.  One student, an engineer, forced to leave his family behind and currently disabled with a distressing and, as yet, undiagnosed nerve injury, told an interviewer, “I left much behind, but one thing I brought with me was a positive attitude, a strong work ethic, and a hope for a better tomorrow.”

There is a common thread amongst the things these Afghan evacuees brought with them from the Kabul airport to a US military processing facility in Virginia, and ultimately to Buffalo: a reminder of their personal dignity. 

Creek Rock Art: Flight to Egypt (Dona Eley)

Did Mary take the perfumes (frankincense and myrrh) with her when she and Joseph fled with the baby Jesus to escape the wrath of Herod?  (Thank you, Egypt, for your hospitality.) During his family’s exile, what did Joseph look to for dignity and hope to deal with the fear, anguish, sense of powerlessness, boredom, lack of community and meaningful work, heavy responsibility? 

Pastor Acher Niyonizigiye, a former refugee from the Burundi civil war of the 1990’s, wrote, “We often see the Nativity (Advent) as a celebration of comfort and innocence.  In Europe and North America, Christmas is often a time to think of coziness.  Could Joseph or Mary ever fit in with these modern Christmases?”

Could Joseph or Mary ever fit in with these modern Christmases?”

– Acher Niyonizigiye

Dona and I are big fans of coziness and comfort.  But during this Advent season we are grateful that in our cozy little corner of western New York, we could be a part of one of the organizations providing some measure of comfort and safety for our new neighbors.  I do not want to over-compare myself to Joseph and Mary, or even the strength and resilience of the Afghans I met, but I do pray that at life’s inflection points along the journey through this fallen world I will, like Joseph, ‘get up’ and do what the Lord commands (Matthew 1:24 & 2:13), or, like Mary, be the Lord’s servant and embrace the small role I am given in the Kingdom (Luke 1:38).

I read the paragraphs above to Dona.  After appropriate encouragement she said, with the insight and clarity I depend on, “You are missing the most important part.”

Advent (arrival or ‘the coming’) is a season of expectation.  There are some parallels between the Christian season of Advent and the arrival of the Afghan evacuees and their attendant expectations for a better life.  But for Christian believers there is so much more.  At Advent we look back at the birth of Christ and ahead to the return of Christ.  Faith in the reality of the past and hope in the reality of the future combined.  The Nativity is a big deal.  But we, who embrace the Jesus story, see the return of Christ and our resurrection as the ultimate deal.  With the Second Advent, poverty, missed employment opportunities, anguish, powerlessness, family separation, disease, terror, war, even death will be no more.  We will be done with this fallen world. 

As I reread the last paragraph I thought of our own uncertain future, Dona and I. This month, my brave and lovely wife entered her 4th year of struggle against metastatic cancer. Six different therapies to date, this last one the most draconian: chemical infusion each week, hair loss, nausea, fatigue. There are lots of tears shed by us both, but yet, and yet, we experience the joy of the reward of the ultimate deal. I can say confidently and without false bravado that Dona has a ‘peace from God that surpasses all my understanding.’ And I feel it, too. (Philippians 4:7)

Now, how to proclaim this good news, the Gospel, winsomely, humbly, and authentically to our Afghan neighbors, indeed to all our neighbors?

Wishing you a joyful, hopeful Christmas and 2022.

Dave

Why do I feel ashamed?

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“If you have your health you have everything.”

I have heard this refrain many times in my life, especially from Italian American relatives. Maybe it is an Italian American sentiment, but I suspect many people feel this way. How else can we explain a culture that is consumed with living better, longer, and more independently. Is not living with vim and vigor a prized and admired achievement? Are not many of us willing to put commitment, time and money into achieving our health goals through exercise, better nutritional choices, active recreational activities (baking, bowling and backgammon not qualifying), as well as keeping up with all recommended preventive health measures?

Good health is no doubt a great blessing, but it is also become a badge of honor to proudly display. “God bless you” is an expression that I find myself using when I meet old people who want to brag on their longevity and good health. This is odd. It makes more sense to pronounce God’s blessing on folks who sneeze. They might need a blessing to ward off sickness. Longevity with vibrant healthy living is certainly a gift from God but it is not a reward!

So how does this relate to cancer and shame?

Many cancer patients and those suffering from chronic illness struggle with a sense of stigma, guilt, or shame. Why should this be? Since diagnosed with stage-3 breast cancer in 2014 and now dealing with metastatic cancer since December 2018, I had come to understand this feeling.

Two weeks ago I did not get a good scan report. I had been feeling relatively good, not vim-and-vigor good, but good enough to be positive as I waited for the report’s findings. My husband and I were therefore blindsided by the news (some liver tumor progression). The FNP was kindly trying to comfort me before the oncologist came in to discuss a new treatment option but I just wanted her to leave so I could comfort David, knowing he was distressed by the news.

“David I’m so sorry for you,” was, oddly, the first thing I said to him.

He kindly responded, “You shouldn’t feel sorry for me. I feel so badly for you.”

What was my apology about? After some self-examination I realized that I irrationally believed I had let him down and was the cause of his angst and worry. I also was reluctant to tell friends who were praying for me. Again, I felt like I was letting others down; that somehow, I did this to myself or that I was defected and not able to do my part in this battle against cancer. But worst of all I was dealing with the erroneous belief that God did not want to bless me in a way we were all hoping for because I was somehow unfit. I felt ashamed.

With the media applauding the strong and energetic

Shame and Shaming

Shame, according to Webster, is a ‘painful emotion caused by consciousness of guilt, shortcoming, or impropriety.’ It is an intensely difficult emotion. ‘Shaming’ is also a noun and is the act of subjecting someone to shame. And there is plenty of shaming in children’s and adults’ lives. Shaming arises from what we esteem in our culture: media-good looks, fit bodies, youth, material acquisitions, achievements, and correct opinions.

Yes, shaming is ubiquitous in parenting, marriages, health visits, social media, teaching, and among kids on playgrounds, middle and high schools.

In his early twenties, my husband taught science in a junior high school in North Carolina. Junior high is ground zero for shaming. No one is exempt. David humorously recalls one day when a student became upset with him.

“You are nothing but a big-nosed, baby teacher!” she shouted, storming out of his classroom.

That evening, David looked in a mirror, carefully examining his face.

“Darn, she is right! I do have a big nose.”

Dave and Dona debutant 1977 edited
Me with ‘big-nose, baby teacher’ in 1977. Story and photo used with complete permission from my husband.  Yikes! On closer inspection, my nose could use a tweak (vanity, vanity!)

David is forever grateful this shaming occurred when he was 22 and not 12; allowing him enough maturity to process the revelation (kinda). But he admits that from that fateful day he has been forever conscious of his proboscis.

Personally, I like his nose. I was a bit bothered by the label, ‘baby-teacher.’ What was that about?

Getting back to cancer

I know that cancers start because of a mistake in copying DNA when normal cells are dividing and growing. Mainly, these mistakes just happen by chance. I remind myself of this over and over. And yet, doubt creeps in.

We have heard it said and perhaps said it ourselves, “He was diagnosed with cancer, but he was a smoker. She was diagnosed with breast cancer, but she was not doing breast exams on herself (that was me), or she ate a ton of junk food.”  I could go on with the ‘buts’ and ‘victim shaming’.  Fear and shame are intermingled with cancer.  Without necessarily meaning to, we feel subtly critical of those stricken with cancer and comfort ourselves against the fear of cancer by looking at our wellness as doing it right.  Then a cell mutates during replication and somehow finds a way to continue to replicate……..and we feel the sting of shame.

The shaming of Christ

“If you have your health you have everything” is shortsighted. We can have our health, live wonderfully well until 105 and not have everything. Everything includes the eternity we are destined for. 105 or 1005 years old is paltry in comparison. Our bodies and/or minds will someday fail us so now is the time to take stock of the purpose of human life as God-imagers, drawing our self esteem and  identity from being beloved children of God.   And most of all we are to take comfort and relief from trusting in the Christ who not only died for sins but also for our shame regardless of what cancer or culture tells us or what we tell ourselves because of shame from things we have done.

In fact, Jesus endured shaming himself.

Hebrews 12:2

We fix our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God.

To quote John Piper:

“Shame was stripping away every earthly support that Jesus had: his friends gave way in shaming abandonment; his reputation gave way in shaming mockery; his decency gave way in shaming nakedness; his comfort gave way in shaming torture. His glorious dignity gave way to the utterly undignified, degrading reflexes of grunting and groaning and screeching.”

And so, I work to move on, praying Psalm 25:1-3b:

In you, LORD my God, I put my trust. I trust in you; do not let me be put to shame, nor let my enemies (my self-image, the stigma of cancer, American perfectionism, Satan the accuser, or any worldly thing!) triumph over me. No one who hopes in you will ever be put to shame.

Name Your Tumor

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Being known by name is significant and a comfort in the midst of difficulty.

Naming tumors is a real thing. And I don’t mean naming the specific type of cancer. No, these are pet names. Arnold, Terminator 1, Terminator 2, and disliked politicians are common tags assigned by cancer patients. Most people report that naming their tumor is an empowering exercise allowing them to wrestle back a little control from a bully.

Unfortunately for me, I would need a baby naming book in order to find names for all the little tumors that are floating around. Fortunately, I’m not attracted to the name-your-tumor game but I’m not judging those who are. Whatever helps cancer patients not feel so helpless is probably a good thing.

But I’m intrigued by the need to name a thing or person.  Assigning names, being referred to by names, labeling objects by names, Hello_my_name_is_sticker.svgand finding meaning in names fosters connection and intimacy to each other, our environment, and, apparently, our diseases. The importance of naming is found in both Testaments. Being named, having a name carries spiritual significance. God revealed his name to Moses.  Jesus was named Immanuel, ‘God with us.”  Both Peter and Paul were renamed by Jesus.

When I was first married, I complained to my husband that I wanted to hear my name spoken by him more often. Hearing my name by my beloved made me feel special to him and more connected. It capped off the special relationship we shared. No doubt he was initially perplexed by this marital complaint but happy to accommodate.

The following verses in the gospel of John at Christ’s resurrection are exceedingly meaningful and tender to me (emphasis mine):

John 20:15-16
He asked her, “Woman, why are you crying? Who is it you are looking for?”
Thinking he was the gardener, she said, “Sir, if you have carried him away, tell me where you have put him, and I will get him.”
Jesus said to her, “Mary.”
She turned toward him and cried out in Aramaic, “Rabboni!” (which means ‘Teacher’).

Imagine her relief, her love, her comfort to hear her name spoken by the Lord at such a time.  It’s an image that carries me through this harrowing medical ordeal. Imagining the Lord of the universe saying,

“Dona, I’m here with you.”
“Dona, I’ve got this, don’t be afraid.”
“Dona, you will be with me forever.”

I don’t feel a need to name a tumor or tumors to feel more empowered or in control. He knows and calls me by my name. That is enough. That is everything.

From FOMO to JOMO

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What cancer has taught me about the joy of missing out (JOMO)

dog restingAs it turns out an antidote for the subject of my most recent post, FOMO (fearing of missing out), is JOMO (joy of missing out). JOMO is basically saying “no” to the push to stay busy and connected with whatever presents itself in order to say more ‘yeses’ to activities that are more in-line with our values and interests. Many are jumping on the JOMO wagon. Productivity gurus are incorporating JOMO in their training. Stressed out working moms have self-help books to achieve JOMO. CEOs are trying to find balance and enjoyment within the pressures of fierce business competition. It’s all part of a new cultural phenomenon – searching for peace and joy within a world of relentless busy-ness, competition, and high expectations.

At first blush the acronym, JOMO, seemed forced and naive to me; but then I realized that it was exactly what David, my husband, and I were attempting to do since my diagnosis of stage-4 cancer. Doubling down on the present and embracing joy is integral to the 3-part strategy my husband and I developed to cope and grow.

1. Pursue the best possible treatments for the best possible outcomes.
2. Double down on the present. Experience joy where we can find it.
3. Think deeply about eternity.

I highly recommend you read his post, For Whom the Bell Does Not Toll: Stage 4 cancer patients have another definition for victory.

And there is evidence that we are doing just that. Laughter has always been coveted in our relationship but there is now more of it as we appreciate grandson antics and their hilarious comments. There is more laughter as we look for the amusing in ourselves and others; reminding ourselves to not take ourselves too seriously. There is more laughter as we retell shared funny experiences. There is joy as we actively pursue our passion to see marginalized people treated with God-given dignity and value. There is joy as we worship in church. There is joy as we enjoy the natural beauty around our creek cabin. There is joy of family and friends. There is so much joy and delight in our lives that we’ve been blessed with. We are grateful. But ….

• This is easier to do if I’m not in pain
• This is easier to do when I have had some distance from a disappointing oncology appointment.
• This is easier to do because it is my story and not a loved one’s.

In other words, there is within the JOMO movement a limitation. There is an exclusion clause, unspoken but nonetheless imbedded in its good intentions. Stopping to smell the roses sometimes leads to being stung. Being stung too many times can lead to anaphylaxis. Smelling a rose must give way to getting help to breathe. There are life experiences that leave us limping along, breathless from the sheer pain and exhaustion of life’s journey. Sometimes I feel like that. JOMO becomes elusive at best and downright annoying at worst. And so I cry. (See: More on finding comfort from God.)

It’s here that the 3rd part of our strategy takes dominance over the “doubling down on the present.“ Thinking frequently and intentionally about eternal life with the God who loves me is fundamental to any nod of acceptance and significance that I give to JOMO.
“So Heavenly-minded that a person is no earthly good” is not born out in the course of my life nor for countless others. It’s quite the opposite: becoming more heavenly-minded has prompted the Jesus-committed to do what can be done to effect positive change in this world while at the same realizing that Christ will ultimately set all things right. And some have made great sacrifices to that end.

But what about the fear of missing out on all the beauty and companionship of this world?

flowering dogwoods texasMany years ago, my two young daughters and I were riding our bikes together in our neighborhood. The balmy gentle breeze of a Virginia springtime with its blooming azaleas and dogwoods, greening weeping willows, and scented pine and magnolia underscored the laughter of my girls. I was filled with an inexpressible Joy. I remember silently thanking God while at the same time bemoaning that it wasn’t going to be ours for long. A transfer to another location in the country was imminent.

I longed for permanence in beauty and perfection. It was then that I realized for the first time that the aroma of magnolias and the music of a child’s laughter were only clues and hints of glory – not yet fulfilled nor meant to be. He has placed “eternity in our hearts”. (Ecclesiastes 3:11) The permanent, perfect, and pure in love and beauty would my inheritance. I think I can wait. Lord, help me wait.

‘Death Cafes’ and Me

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“Death Cafes” are springing up in cities throughout the world to address the subject of death and how-to live with death’s inevitably.

Apparently, the movement was started to give people a “safe place” to talk about death without being accused of morbidity. Billed as a philosophical inquiry on mortality, people looking for a grief support group will be disappointed. “Eat cake, drink tea and discuss death”, is the benign motto. The decor includes mugs, teacups and posters with creepy skulls, skeletons, and ravens painted on them. I admit that I’m put off by the skull mugs in the Death Cafes. death mug

But these venues and discussion groups deserve more than half a point. The vast majority of Americans live in the mythical state of immortality. ‘Mythical immortality’ (my term) is the belief that other people die, I don’t. (See, ‘I Like the New Metastatic Me’) When we do think about death it is in the context of avoiding it. Anne Patchett writes:

“The fact is, staving off our own death is one of our favorite national pastimes. Whether it is exercise, checking our cholesterol or having a mammogram, we are always hedging against mortality……Despite our best intentions, it (death) is still, for the most part, random. And it is absolutely coming.” 1

Death cafes, though they deal with an inevitability ignored by most, do not capture rightly the travesty of death or the Christian hope of triumph over it.

The point of Death Cafes is to make death less fearful in an age of anxiety. I get it.  But the death mug approach to the subject does not capture the travesty of death. I say travesty because the Bible makes it clear that death is an enemy that is finally destroyed with the coming of the new heavens and earth at the culmination of time. And that is where the Christian hope comes in. The story is not over with our deaths. There is the hope that Christ ushers us into his glorious presence where every tear is wiped away and grand reunions are still to come. So maybe what I could benefit from would be a café whose moniker is “death does not have the last word”. A safe place where my faith tradition is shared with others so that I hear stories about people who have died well within the confidence of being on the threshold of an eternal reality. Granted my death café sounds a bit exclusive as it would possibly not be very attractive to secularists or folks from other faith traditions; but at the end of the day, with facing my own mortality I want to hear a café filled with conversations about hope, faith, courage, love and forgiveness. I want to hear and talk about Jesus. I want to live life in the moment with increasing gratitude. Hearing stories about people who lived well up to the moment of their deaths is my cup of tea and I will happily eat some cake while doing so.

 

  1.  Ann Patchett, “Scared Senseless,” The New York Times Magazine, October 20, 2002.

Intimate News

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I made an unusual request of my oncology team. I told them that when I returned the following week to hear the results of the radiologist report and the status of cancer progression, I wanted them to tell David first. I would be in the waiting room to hear from him. He Patient to doctorwould sit with me and go over the results.  We might pray together, then we would go the clinic room together to have the results further explained by the team and have our questions answered.

Weird, cowardly, childish, weak, faithless, avoidant, dramatic, insensitive to my husband by putting him in this position? All those descriptors passed through my mind as the day approached. On the actual day, I decided to forget the elaborate scheme and face up to the news without preamble. But my husband gave me a word picture that took away the shame.

“Dona, you are going to have to eat the whole sandwich (the radiologist’s report) at some point but how you want it presented – open-faced, garnished, toasted – is completely up to you. You’re the one going through this. Do it the way that makes it most tolerable.”

And my team completely understood, or at least acted like they did.  As my lead doctor said,

“Dona is the one with cancer, not me.  We do it her way.”

Intimacy

So, what was going on, aside from fear? It is intimacy and trust – intimate knowledge coming through my most trusted person. I wanted news from the person whose life would be most affected by this personal and significant information and from the person who knows me better and loves me more than any other.

An example from a long-ago happy event:
Who was the first person I told when i discovered I was pregnant? Life changing information that only made sense to share with the person most invested in our lives together. And whose lives would change dramatically as a result? Mine and his.
Again, intimate personal information shared within the most intimate of relationships. It’s really (in my mind) not so different from news about a disease notorious for causing pain, disability and death. I wanted to hear it from my husband no matter what it was.
But fortunately, intimacy doesn’t stop there.

Intimacy with God

David’s intimate relationship with God was ultimately what I was counting on in anticipation of hearing news related to my survival. If the scan and test results were disappointing, then I trusted David to tell me the facts along with the crucial caveats and realistic encouragements that would calm my fears and reorient me once again to the hope I profess in Jesus in all and every circumstance of life. I imagined praying together in those moments – intimacy with God would always and forever be at the heart of my life’s purpose and hope, even in life’s major disappointments.

The obvious

What if there was no husband or one that was willing to participate in my plan? Or what if there wasn’t a substitute like a trusted pastor or friend who could lead me to “the shepherd of my soul”?  Would I have fallen apart? Fallen into a pit of despair of which I couldn’t climb out?

I don’t imagine so. And here’s why:  Betsy Ten Boom who died at Ravensbrück for her participation in hiding Dutch Jews during WW2 said,

“There is no pit so deep that God’s love is not deeper still.”

I cling to that with gratitude.

Thankful Postscript
My test results were encouraging: “Skeletal cancer stable, metastatic liver disease showed marked improvement.”

Of course, this begs the question, would I write this same post if the news was not good? I hope so, I pray so. Again,

“There is no pit so deep that God’s love is not deeper still.”

 

 

 

Guest post from my husband: For Whom the Bell Does Not Toll

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Stage 4 cancer patients have another definition for victory

Preamble: I took note of Dona’s post, the Clarity of Ink where she contends that writing forcibly imposes boundaries on thinking and reins in anxious thoughts. So, I began to write about my worries and hopes for my wife who is living so valiantly with Stage 4 cancer. Dona suggested when I was ready I could guest-post on her blog. I’m a bit uncertain making this public. Writing is quite therapeutic, but it is likely only a help to me. Moreover, as I reread this post just before publishing, I realized there is much essential stuff not in it: what it means to trust and pursue God, the necessity of prayer, the hope for miracles, the need for a positive outlook, the understandable disconnection and feeling of helplessness that the lover has for the much loved sufferer. Well, perhaps those are the subject of future posts.

– Dave Eley

The atrium lobby within the Roswell Park Cancer Institute is what all good atriums should be – bright, airy, cavernous (4 stories), full of activity, welcoming – an excellent stab at normalizing the experience of entering an institution with a fearful name. RPCI has the practice of ringing a bell in the atrium each time a patient finishes their treatment regimen. Everyone scuttling through the lobby stops and applauds. The finish of a tough race in the fight against cancer. Victory for a person who has prevailed, with his or her team, over a great challenge.

roswell atruim
Winter concert in the Roswell Park atrium taken while I waited for Dona to finish a CAT scan

By in large, the bell rings for patients that have Stage 1-3 cancers. Dona was Stage 3 in 2014. In the words of Dona’s surgeon, “the horse was still in the barn.” Like others, she enjoyed the huge relief and encouragement that her cancer was quite possibly curable (see Dona’s post, The Bad News Ends Today ). But to survive, she endured a range of harsh treatments. With late-stage non-metastatic cancer, she got the full nine yards: surgery, uncomfortable surgical incision drains, subdermal medication port implant (actually quite a convenience), chemotherapy, hair loss (but she had a half-dozen great wigs), fatigue, infections (one landed her in the ICU), shingles, endless radiation which compromised my health from eating endless donuts while waiting for her in the hospitality suite. Yet, there was always an endpoint; a horizon to labor towards. At some point the bell in the atrium would toll and there would be the ‘victory dance’ of a person who has prevailed, with her team, over a great challenge.

Then there is the group for whom no bell tolls. This is the stage 4 group, or descriptively, people whose cancer has spread to distal organs. The horse is now out of the barn.  We discovered shortly before Christmas 2018 that Dona was now in this group – the ‘new metastatic me’ as she now calls herself.

Although a full array of treatment options can be marshalled to fight the disease, the cancer is not curable.  Simplistically speaking, medically, the treatment is whack-a-mole; like an endless fight against urban insurgency. Battles will be won but these folks must develop a new definition for victory over cancer.

Mission Objectives
Roswell Park’s vision is “to free our world from the fear, pain and loss due to cancer — one act of compassion, one breakthrough discovery, one life-changing therapy at a time — until cancer is gone.”  I love that: big, vivid, energizing, inspiring.  It holistically covers both the process and the objective. But it is the mission and vision of science and human endeavor. It is not complete for the incredible woman who is my wife that is now picking her way through the Stage 4 scree. (See: Nick, the barber, says, “Trust God, then your doctors.

Dona needed a new plan for metastatic cancer
I am a retired military officer. The sailor in me loves well-crafted mission objectives. The man-child in me wants to tamp down anxiety by doing something, ANYTHING.  So, shortly after Dona’s setback we worked together to draw up a plan of 3 parts:

1. Pursue the best possible treatments for the best possible outcomes.

We will stay informed and be our best advocates. But it is a relief that this mission is mostly in the hands of the excellent, caring, encouraging Roswell Park team. There are new therapies today that were not available when Dona was first treated in 2014.  We are grateful.  We are maintaining a positive outlook.

2. Double down on the present. Experience joy where we can find it. 

Ordinary experiences are much more intense now.

Two weeks into a new treatment regimen, Dona developed incredibly painful mouth sores. That, coupled with a low blood cell count and worries about an infection kept her in bed and PJ’s most of the week; working on a blog piece titled, ‘Loneliness.’

Our daughter provided therapy and distraction when she asked me to pick up our two grandsons from school. Dona wanted in. She arrived at school armed with treats. She had purchased two bottles of flavored milk – chocolate and mint green. I told her not to present two different bottles of milk for the kids would argue over one in favor of the other. She said she knew which flavor each preferred. No problem. Once in the car kids began to argue, push and shove over the green milk. I smirked. I love being right. Dona demanded that we immediately return to Wegman’s to exchange the chocolate for another green. Though annoyed, I dutifully pulled into Wegman’s and Dona leaped from the car. The boys and I sat in the car for what seemed like less than a minute before she was back. We were startled at her speed. Each boy now had their own delicious bottle of green mint milk, or what the younger called booger-milk. The older boy, having more academic training, called it, mucous-milk. Much laughter. That was joy for us.
Not always, but sometimes suffering can make the little things, even silliness, seem so much more. At that moment joy was the vivid green of the ‘mucous-milk.’

I love my wife. Strong and courageous, longsuffering without being stoic. Looking for rays from a pale winter sun and finding them.

3. Think deep about eternity.
This, of course, is the endeavor of a lifetime. Much to think about and write here. Tim Keller has the jest it:

“Suffering takes away the loves, joys, and comforts we rely on to give our life meaning. How can we maintain our poise, and even our peace and joy, when that happens? The answer is that we can do that only if we locate our meaning in things that cannot be touched by death.”

Timothy Keller, Walking with God through Pain and Suffering, (Dutton, 2013), p. 36

What then is victory over cancer?

The Apostle Paul writes:

“Then what is written will come true. It says,
“Death has been swallowed up. It has lost the battle.” (Isaiah 25:8)
“Death, where is the victory you thought you had? Death, where is your sting?” (Hosea 13:14)
The sting of death is sin. And the power of sin is the law. But let us give thanks to God! He gives us the victory because of what our Lord Jesus Christ has done.

– I Corinthians 15:54-56

‘Cancer can’t win’ is a frequently used banner for fundraisers. I Googled it. Most of the hits referenced Christian hope in the face of the disease. Many hits reproduced a poem written in the 1970’s by Robert Lynn for a friend. This poem was passed around pre-internet hand-to-hand as the words of an anonymous author and was eventually posted on line by people wanting to comfort friends and family. In the mid-2000’s, Lynn discovered his work had garnered over 160 million hits. It was time for a copyright!

CANCER IS SO LIMITED

Robert L. Lynn

Can cancer conquer you? I doubt it, for the strengths I see in you have nothing to do with cells and blood and muscle.

For cancer is so limited—

It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot invade the soul.
It cannot reduce eternal life.
It cannot quench the spirit.
It cannot cancel Resurrection.

Can cancer conquer you? I doubt it, for the strengths I see in you have nothing to do with cells and blood and muscle.

© 2007 by Robert L. Lynn
Permission to publish the poem has been requested