From FOMO to JOMO

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

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

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.”


 





 

 

Scans: It’s that time again :(

Medical scans make known the presence of disease. That can be terrifying. But there is another kind of knowledge.

ct scanIt’s that time again. I have metastatic breast cancer and so every 3-5 months I have nuclear imaging (bone scan) and a CT scan (vital organs) to determine whether the cancer has progressed. I had the dreaded scans a few days ago and now I await my appointment with the oncology team to review the results.

The whole ordeal feels like entering enemy territory without defenses. My peace is rattled as I sense a power and authority to direct the course of my life. But this is ridiculous. Scans have no power and authority. They are not an enemy. Scans are, essentially, objective knowledge; knowledge of the presence of disease. Scans are a kind of friend but a friend I don’t like or trust to make me feel good. I want friends to tell me what I want to hear. Scans tell it like it is. There is no sugar coating the truth of my physical innards. They may or may not reveal a need for surgery, chemicals and/or radiation to eradicate the sometimes-silent killers – the terrorist cells of the inner space. They can reveal news of intractable corruption and devastation that medical science is powerless to stop. Who wants friends like these? I don’t but yes, I do, but not really. Yes, really, I do. (Terrifying ambivalence!) What to do with such a truth-telling no-holds-barred friend? How am I to get a good night’s sleep the day before such a “friend” encounter? How do I calm down a nervous system that has been designed to be alert to threat? How do I calm the raging mind storm as the machines move up and down the body exposing and objectifying me as they take pictures of bones and organs?

Spiritual application:
In the New Testament the word of God is described as a type of scan – a scan of the heart and soul. And it’s that scan that I truly need to pay attention to. God’s in charge and I am his charge.

“For the Word that God speaks is alive and full of power [making it active, operative, energizing, and effective]; it is sharper than any two-edged sword, penetrating to the dividing line of the breath of life (soul) and [the immortal] spirit, and of joints and marrow [of the deepest parts of our nature], exposing {and} sifting {and} analyzing {and} judging the very thoughts and purposes of the heart.”
Hebrews 4:12

There are two types of scans that I have agreed to submit to. They both have authority over me. They both have knowledge of me. But as Lord Byron wrote long ago, “The Tree of Knowledge is not that of Life.”
According to Nicky Gumble of Holy Trinity Brompton in London there are different types of knowledge, and they are not all equally valuable. In French, there are two different words for ‘to know’. One (savoir) means to know a fact, the other (connaître) means to know a person. It is never enough simply to have knowledge of facts. To love a person, one must ‘know’ the person. Love resides in the ‘Who’ not the ‘What.’

Medical technology scans have authority in diagnosis that exceed my own, my doctors, my loved ones – anyone. They have a knowledge that transcends blood tests and feeling states. Scans are designed to guide a path of medical intervention. They don’t cause the problem; they expose the problems so that wise decisions can be analyzed and recommended.

But scans offer no hint to a meaningful existence beyond the body. Medical scans do not reveal corruption of the soul and a cure for it. Scans give no promise of redemption nor power for resurrection. Scans offer no love. And they certainly can’t inspire awesome wonder and respect. Christ fulfills all that and more.

So, this Thursday the door of the consultation room will open, my team will walk in, and my senses will be as alert as a gazelle listening for the approach of a lion. I will be comforted and loved by the faithful husband next to me, and by a medical team who truly care for me. And in that room the Holy Spirit (the Counselor, Comforter and Friend) will be present whether I sense His presence or not. I am known! I am loved! I will be ultimately loved and comforted no matter what

Does facing incurable cancer scare the hell out of you?

I’ve always been interested in theological discussions and debates concerning the nature of hell among evangelical theologians. I have my “hard and fast” opinions about this serious matter but that won’t be the topic of this post. Sorry, for anyone out there who thought this was going to be a very provocative diatribe from an untrained non-seminarian theologian who admits to having strong opinions that she’s accustomed to changing. If you are interested, a report by the Evangelical Alliance Commission on Unity and Truth Among Evangelicals (ACUTE) called ‘The Nature of Hell’ outlines the differing opinions in clear and concise language.

Philosophical thoughts about cancer and mortality are frequent speculations. Recently, I looked for studies about what people with incurable cancer thought about hell. My cursory search didn’t turn up much, but I did come across a website for people voicing their thoughts about their diagnosis of terminal cancer. Hell was not a major topic, but one comment written over a year ago was difficult to read and generated a lot of responses from other sufferers. The commenter began with the following, “I have been told that I have 4 months to live and I am so afraid I am going to hell.” The responses were quick, empathic, and supportive. This woman’s heart-wrenching, brutally honest attempt to explain why she was in this frame of mind included her offenses to her family and specifically to her young daughter since her diagnosis. She felt conviction over the mess she had made of her life before diagnosis. But the real source of her anguish was the angry lashing out and jealousy towards healthy family members and friends.

I was moved by two observations. The first observation was the compassion extended by terminally ill responders who were compelled to try to make this woman feel better. Why were these fellow sufferers so compelled to help? Speaking from my own experience, there seems to be enough suffering to the illness as well as the grief of anticipated losses without added dread of future condemnation and alienation. That is unbearable. Like the others I was touched and wanted her to be at peace.

The second observation concerned the content of the responses. They ranged from:

1. On one end, “Forget about it, hell is a human construct that started in the middle ages by the church to secure their control and power over people,” to the other end,

2. A detailed lengthy comprehensive gospel presentation which was actually good if the sufferer could take it all in, to

3. The middle majority, which encouraged the writer to seek forgiveness from and reconciliation with those she admitted to hurting.

These posts were over a year ago. This woman may not still be alive, and the site did not show her response to the comments her original plea generated. Did she find peace? I hope so. If I had responded a year ago, I like to think I would have written:

“None of us are good enough to meet the holy standard of God. None of us. Thus, God himself in Jesus appeared 2000 years ago with a mission for securing our forgiveness. By simply trusting in his sacrifice by faith we are found perfect and acceptable before a perfect and holy God. Nothing is more liberating for the guilt-ridden. I know this. Then Christ fills our heart with gratitude and out of this grows the humility and courage to trust God to ask forgiveness from those we have offended.”

I hope she took the best of the advice and received the grace through Christ who forgives it all. I can’t imagine that if she sought her family’s forgiveness that she did not receive it from them. If she  did not, well, peace with God trumps all to secure her peace for eternity.
A recently composed hymn, “His Mercy is More,” says it beautifully. It was inspired by a sermon by John Newton, the creator of “Amazing Grace”.

“Our sins are many, but His mercies are more: our sins are great, But His righteousness is greater: we are weak but He is power.”

– John Newton

A Dangerous Cancer Diagnosis Revealed Surprising Parallels to the Good News

A surprising diagnosis of metastatic breast cancer in December left my nerves frayed and my capacity to see the positive challenged. That is not quite accurate. Anybody who knows me well knows that my capacity to see the negatives in a situation is formidable. I like to refer to myself as a troubleshooter who can sniff out DANGER with remarkable neurotic accuracy, a source of endless frustration to a husband, who is a natural optimist.

My first consult after a series of scans taken 3 months into treatment was tense (you think!). Theresa, my oncologist’s right-hand nurse practitioner, read me the radiologist’s report which sounded alarmingly ambivalent to my ears and apparently my facial expression exposed my alarm.

“Dona, what is going on? I’m not encouraging you. I can tell by looking at you. “

All I was hearing was something like this little tune, “Cancer here, cancer there, a little cancer sprinkled everywhere.”

She tried again to give me the report’s findings with more color commentary and positive caveats. No dice, I just couldn’t hear what was good in the report.
Finally, Theresa looked at David, “David, help me out, why am I not able to encourage Dona?”

They started talking about the way I process new information as if I wasn’t in the room. I finally said, “OK, Theresa, bottom line – should I be happy from what I’m hearing? It sounds confusing and unconvincing.”

Theresa’s response helped, “Dona, you should be ecstatic!”

I breathed my first deep breath. But as David explained, I still needed to process (David, gets me and most of the time he is supernaturally patient. Bless him). I hounded him the next few days with a ton of questions. I wanted to understand and emotionally experience the good news of this first 3 months of treatment on a new drug.  Since that day I’ve wondered about my reactions and wondered whether there were spiritual parallels.

Life and death information takes serious processing
I, like most people, want straight forward explanations. If people are like me, they want a simple dopamine rush of good news; end of story, no caveats and no qualifiers.
I was confronted with a report about life or death. If ever there was a time to seek clarification and interpretation wasn’t that the moment? I can be forgiven for not being easily placated considering the gravity of my health situation. There was another problem. I was mentally and emotionally dense to the language, descriptions and vocabulary of this serious diagnostic report. I needed help to figure this out. Where was the good news? I kept asking until it finally seeped in, but it was a struggle.

There was another time long ago when good news didn’t sound immediately like good news. When I was an undergraduate, I was walking a dorm hall and was roped in to a bible study in a dorm room. By the time I left I was handed my first New Testament. I read and read and read. The good news that these dorm Christians were talking about was escaping me. The more I read the worst I felt about my spiritual condition and how little my life reflected the teachings of Jesus. I wasn’t getting this good news thing. In retrospect, I was feeling the bad news of being a sinner. The good news – relief from disappointment and guilt – was only a whisper at that point. I entertained chucking it for something spiritually benign, mellow and nonjudgmental. I tried transcendental meditation but continued private reading of the New Testament. Jesus was compelling, but he said some things that I didn’t understand or even like. Some of what was written provoked an angst that was akin to despair. I wanted to read something that made me feel good and accepting of where I was with no changes required. Where was this good news? This New Testament document was serious. There was an alarming truth that intuitively felt like I was being confronted with life and death. I got that far but I was stuck.

Clarification and interpretation are needed
I needed help with the vocabulary and concepts of the New Testament. I had questions, tons of questions, with no one to go to but books that I read while sitting on floors of book stores and libraries. Eventually I found smarter, wiser and older people than me to throw all my questions. I was a dog on a bone; stubbornly holding on but growling along the way, refusing to be distracted or relaxed. Accepting this Good News about Jesus without fully understanding would not stand the test of time. Giving up on the whole thing was a viable option – too much cognitive dissonance. But in hindsight that ‘dog on a bone’ compulsion was a gift of the Holy Spirit. I had to face and humbly accept the bad news about myself to get to the good news: that through believing in Christ, his sacrifice and resurrection, I could be forgiven and receive the peace I had been longing for. Ultimately, I received the good news, ended the growling and began to enjoy and relax within the joy of my “bone”.

Final parallel: Discipleship can feel like medical treatment
Long term Christian discipleship, all those moments of your life after you receive the Good News, many times is like reviewing the reports of full body scans and looking for malignancies. The news can be bad. We may realize there is more work to be done. Questions and doubts will come up. A treatment plan may need to be developed and rigorously implemented in ways that are not comfortable. However, we will have the Great Physician treating and encouraging us to “fight the good fight” for knowledge of the truth and then persevering (2 Timothy 4:7) until that one day when we rest in the presence of God forever.

Guest Post: I Gave Her Bad Advice

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.”

A Post of Lament

I walk into the Roswell Park Cancer Institute with my senses sharp-focused and on high alert. I’m in another culture and whether I like it or not, it’s now my culture. I belong. I can speak the language, navigate the geography and obey the protocols. But I am determined to remain who I am before I was initiated into this new culture, so I smile a lot for no other reason than to maintain some normalcy. I am a smiler by nature, but smiles are not common in a cancer hospital, hardly surprising but I refuse to stop smiling, just yet. (For more reflection on my Roswell culture and smiling see Duchenne Smiles Only, Please of March 2014.)

Other than smiling, I am scanning the population, looking carefully at faces. The faces resemble mine – lined and showing some wear.

This fact brings me around to a beauty tip that will keep you baby boomers from spending your retirement at the cosmetic counter for one of the billion products promising to be age-defying. Smiling lifts those sagging nasolabial folds, so you look younger. Better yet, you don’t look grumpy even if grumpiness is the furthest thing from your disposition.

My point? The vast majority of the people at Roswell Cancer Institute look like they are 60 and older and that’s a good thing. Cancer is predominantly a condition of the aged. I am reassured by that. Occasionally in the  breast cancer clinic I see a young mom with a helper who is attempting to corral a small child as she waits to be seen. It breaks my heart. It just shouldn’t be. I think of my daughters with their young children and my heart’s response is, “Can I take it for the family?” But we know it doesn’t work that way. Cancer is not a respecter of family life nor of anything remotely related to matters of fairness, kindness or common decency.

When I was first diagnosed with stage 3 breast cancer in 2014 my youngest daughter said, “Mom, as awful as this is going to be for you what I know for sure is that if this was happening to me or my sister you would be a basket case.” Yep, at that moment I had my first moment of thankfulness. Grateful it was me and not them.

african-american-mother-praying-clipart-6Weird back story: when my first child was a toddler a good family friend died of lymphoma. I became obsessed with the fear of cancer. My neck was bruised from searching, prodding and poking for swollen lymph nodes. I went to the doctor pointing out some swollen bits. The doctor was annoyingly unimpressed. I went to another doctor. No satisfaction there either. I drove my poor husband crazy with the “what ifs.” (David lovingly refers to that period of our lives as the neurotic imaginary cancer scare of the 80’s). So, what was going on? The therapist in me analyzes that period of my life as a sort of coming of age process. Motherhood, with its great love for a vulnerable dependent human being, also came with great anxiety, realizing that life held little control. A  little toddler needed her mother and I developed a neurotic need to reassure myself that we could never be separated. Time passed and more life happened (another child was born) there was less time to focus on the scary “what ifs” of this life. My neurosis took a rest. But I am not apologizing nor thinking its neurotic to hold to the view that there is something terribly wrong with a world that takes loving mothers or fathers from their vulnerable young children.

Kate Bowler is a young professor of Christian history at Duke Theological Seminary, author and speaker. She also happens to have stage 4 cancer and has written sharply, poignantly and honestly about how she is supposed to make sense of a young mother dying, leaving behind a husband and young son. She is a Christian trying to make sense of her new reality. Her articles and books are hard reading at times. The caustic wit and   honesty are not typical of female Christian writers who attempt to make us feel better. Be prepared to squirm.

grown daughter and mother_standingBowler is living out my younger self’s worst fear. Now, I have stage 4 metastatic breast cancer but I am long past being that young mother of a small child who lived in dreaded fear of cancer. I’m saddened and anxious about an unknown future but grateful that I saw my little children grow up to be amazing women. But before I come across as too ready to cross the finish line of motherhood, clarity is needed. I am pursuing the best medical treatment, staying as positive as possible, and praying for miraculous healing. I love my adult children and long to see them grow into their 40’s with all the self-awareness and maturity that awaits them. I adore my grandsons and long to live long enough for them to have memories of their Nona. I fret about my 93 year old mother being without her only child. I love, love my best friend and husband of almost 40 years and grieve as I think of his loneliness and aging beyond his 65 years without me. But the utter panic of leaving small children behind has thankfully been replaced with a swipe of my brow that a bullet has been dodged.

What’s the point to this post? Hmm… not exactly sure except to answer the question my husband asked me as I was going down the other day into an abyss of miserable complaining (and it was not the first time) about a miserable world where so much miserable suffering happens to women and children and innocents through disease, cruelty, poverty, corruption, and greed.

“So, Dona, where would you be right now without a hope of an eternity where all injustice and suffering has its comeuppance and end? where all wrongs are made right?”

Hard to know where I would be. I have piled up decades attempting to live the life of a faithful follower of Christ so its hard to imagine living a reality without thought of Him and its implications. But I will say that that belief includes something so important to my spiritual and psychological well being that I quake to imagine myself without it. It’s the belief that I am loved by a “thick-skinned God” who can take my many complaints without flinching, frowning or regretting he knows and loves me. I take my cue from the psalms of lament and the book of Job and the Old testament prophets and from Christ, Himself. As Kate Bowler says, “This life is hard, and this life is beautiful.” I’m just so thankful that I can live my remaining life steeped in the meaning and mystery of a thick–skinned God who gets me even when I struggle to get Him.

Go figure.

Footnote:  In the Hebrew Bible there are approximately 67 Psalms of Lament.  In them the Psalmist complains to God directly about an injustice or tragedy and unabashedly asks God to do something.  With only the rare exception, these poems start with grief and end with trust in God, even joy.  My personal favorite, Psalm 22, is quoted in part by Jesus on the cross, and serves as a wonderful companion to the famous Psalm 23.

lamet scriptures

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

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

 

Farther Along: New Song for the New Metastatic Me

I recommend you view and listen to the following on YouTube.  I know I’m milking the ‘New Metastatic Me’ theme. But NMM allows me so many liberties I never had before………..

Farther Along, sung by Josh Garrels. (YouTube)
https://youtu.be/IctD9l4F-ag

You know what I’m talking about. A song seizes you with an intimate knowledge of yourself. It comes out of nowhere. You weren’t looking for it and even if you were you wouldn’t have found it. It’s not your preferred genre of music and you were not familiar with the artist. It would never be recommended on your Pandora stations.  You listen to other songs on the album and you are disappointed. You want the emotional high to go higher, but it is not to be. Its locked up in just one song: a mystical combination of lyrics, voice, instruments, video images (YouTube version), timing in your life, and whatever else can’t be explained about music and its effect on the soul. So, this new song is comforting the “new metastatic me.”

we humans are sharers

There is always the risk in sharing something deeply personal that it will not be received with the same awe. I know better. I have had people recommend songs, books, articles, art work, movies, etc. that have been meaningful and soul-grabbing for them but I have not been completely on board with their enthusiasm.  But I get it. They can’t help promoting it and nor can I with this song. We humans are “sharers” at our core. We desperately need and cherish connection and never so much as when we are in the storms of life. This is not so surprising as I consider that we are the only created beings made in His image. The Maker of Heaven and Earth who is Love and the ultimate Sharer of love has instilled that aspect of his nature into us. His longing, if such an emotion can be ascribed to the “all-sufficient God within himself,” is for us to be sharers of love with him and extend it to others.

So, no apologies for sending this on to you and you likewise keep sending out your soul’s longings captured in whatever form they come to you. God may very well have something for one of his children to share with another of his children. He’s the ultimate sharing Being after all.

“For God so loved the world that He gave (shared) His One and Only Son so that whoever believes in him may not be lost but have eternal life. God did not send his Son into the world to judge the world guilty, but to save the world through Him.” 

– John 3:16-17

So, thanks Jessica for sharing and sending Josh Garrels’ ‘Farther Along’ to me. I am feeling its love.