caregivers of cancer patients

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.

Guest Post: I Gave Her Bad Advice

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The following post is from my husband, David.

Can a positive attitude affect breast cancer survival? No. It can even hurt.

Since we learned that Dona’s cancer had returned and spread, I have encouraged her to stay positive, think positive, be optimistic. I told her studies have shown that a positive attitude is linked to survival. img_3576

As it turns out, I was wrong. I was giving her bad advice; advice that was not just unhelpful but potentially harmful.

A 9-year study of nearly 1100 cancer patients by the University of Pennsylvania School of Medicine found no relationship between positive outlook and cancer progression and death. At least two additional well designed and implemented studies support these findings. Based on what researchers know now about how cancer starts and grows, there’s no reason to believe that negative emotions can cause cancer or help it grow.

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Not always the best plan

And, as I learned, encouraging a cancer sufferer to stay positive can be anti-therapeutic. It can hurt, particularly when the ‘encourager’ links positive outlook to longevity, like I did.  I placed an additional burden on Dona, who has enough on her plate managing fear, side-effects, and me. Although she never said so, I was likely creating guilt and discouragement during the times she was unable to muster up a positive attitude.

But the impulse is natural. We want to believe that we have the will-power to control the outcomes of a serious illnesses.

Moreover, amongst Christians, we link healing to faith. On the extreme end, the ‘health-and-wealth gospel’ purveyors contend that healing can only come from the certainty of our belief in God’s promise of physical well-being. Without knowing, I may have been playing in to this.

Do I believe that God can heal Dona miraculously? Yes, I’m praying He will. Do I believe He must heal if she or I have unwavering faith? I can’t convince myself that is true. God can heal anyone, anytime, with or without my faith. Linking the certainty of my faith directly and solely to healing places too much burden and power on me. But at the same time, I’m reminded that Jesus told us to believe that we will receive whatever we ask for in prayer (Mark 11:22-24; Matthew 21:19-22). I’m asking Jesus to take my mustard seed of faith and use it however He wants. (Matthew 17:20) If this sounds like I’m waffling, I am. Looking at my own weakness, I take comfort in the father who asked Jesus to heal his child who was afflicted with terrible seizures. He told Jesus, “Lord, I believe, help me in my unbelief.” (Mark 9:21-29)

And then, almost a companion piece to the name-it-and-claim-it Christians is the typical American temperament which ignores mortality and promotes self-determination.

“Fix it, avoid it, or fight it. It is entirely within your control. You can prevail!”
“Cancer won’t win. Just believe you are going to beat it! Be a fighter!”

Dona hates the term, ‘she was a fighter’. She asks, “What’s the corollary for someone who dies of cancer? She was a loser?”

The way forward

Dona is not at death’s door. She has a cancer that is not curable, but it is treatable. She is getting the best treatments for the best possible outcome.

But delusional optimism, that positive thinking will control cancer, is, well,  delusional. Living with hope, however, is essential.  Author and pastor, Tim Keller says,

“The way you live now is completely controlled by what you believe about your future.”

Our pastor, Steve Schenk, told us in a recent sermon:

“Despair is believing there is no way forward. Hope, for the sufferer, is believing there is a path forward.”

How does Dona see a way forward in hope with metastatic cancer? She combines deep theology with practical behavior. To date, I have watched her employ over a dozen different techniques in constructing a path ahead. I would like to list them, but Dona nixed that. She reasons that, one, it would make this post over 2000 words and, two, it places undo emphasis on her behavior.  Fair enough.

But I will write that her efforts, habits, and musings promote hope and joy. And experiencing joy where we can find it has been one of our objectives since we started this journey.  Joy, as we Christians know it, has less to do with our circumstances and more to do with a settled assurance that God knows our condition and that nothing: cancer, grief or even death itself, can separate us from his love. (Romans 8:35-39)

So, how can I help Dona? I asked her and she told me,

“Pray for me, read scripture to me, point me to the reason for my existence, remind me that this reality is not the only reality, and have fun with me. And do these again and again and again and again.”