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 would 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.”
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.
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.
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.”
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.
Weird 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.
Bowler 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.
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.
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.
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.
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.
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.